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WINTER 2000 





Medical Ethics 

from conception to death 

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WINTER 2000 • V (1 L U M E 73, NUMBER 3 



Letters 3 

President's Report 6 

by Sharon B. Miiipin 

Pulse 7 

A joint cancer center is formed, a new 
ckan for medicd education is appointed, 
Building D takes on a new name, a 
comprehensi\'e clinical exam is instituted, 
and HMS marks the miHcnnium 

Benchmarks 10 

New research fronts on attention 
deficit hyperacti\'ity disorder 

Class Notes 58 

InMemoriam 62 


Obituaries 63 

Endnotes 64 

More than a century ago, Fannie Farmer 
taught HMS students how to prepare 
ladyfingers and cream of hahbut soup 
h\ Paula B\ron 


Small Wonders 12 

Dramatic breakthroughs in rcproducti\'e techinology arc creating 
miracle babies — and raising tough ethical questions. 

I) V P H Y L L I S L . F A G E L L 

The Doctor's Dilemma 20 

Ethical quandaries can lea\-e the best trained physician.s 
struggling for answers. 


Slicing the Pie 24 

when limited health care resources must be divided, 
patients often reveal their sense of fairness. 

In I A M E S E . S A B I N 

BeyondJ ack Kevorkian 2 8 

Now that the doctor most associated Vvith euthanasia is in prison, 
can the debate continue in a more reasoned way? 


Whose Death Is It, Anyway? 32 

A doctor m Oregon, where physician-assisted suicide is legal, ponders 
whether terminal patients should ha\'e the right to decide when to die. 



Mind and Body 40 

Research into the relationship between the mental and the 
physical has had a long and rich tradition at HMS. 

h\ EUGENE I . I A Y L O R 

Taking the Cure 

A physician reflects on his experience 
as a patient in a tuberculosis sanatorium 
in the 1940s. 

bv I O H N n s T O E C K L E 

Glorious Deeds 

Committed to relieving human 
suffering, philanthropist Henry 
Isaiah Dorr ga\'e the anesthesia 
field an early boost. 




Har va rd M ediral 

A L U M N 

U L L E T I N 

In this Issue 

y tirst attempt to think about ethics came as an assignment when 
I was a college freshman: to read Kant's Fundamental Principles of the 
Metaphysics of Morals. The book seemed short in my hand but end- 
less on the page. Duty-bound, I read every word with bewildered admiration 
but no real ability to connect the dots. Since then, I've made sporadic 
attempts to firm up my grasp of the issues without ever achieving much 
confidence in the outcome. 

Some ethical principles in medicine are comfortably concrete and easily 
stated: it's never okay to steal from or sleep with your patients. But after 
you've said that, almost everything else can get surprisingly complicated or 
subtle. Even "Thou shalt not kill" has proved to be less than straightforward 
for physicians, because patients counter with, "Whose life is it, anyway?" 
and say they want us to provide death as a service. The debate over whose 
life it is becomes poignant in an utterly different way when the person in 
question is a baby, and competing claims are made by several people who 
have played one role or another in the child's creation. 

It's too easy, and deceptive, to think that ethical uncertainty is dri\'en mainly 
by advances in technology. Practices that were ordinary even 30 years ago now 
seem quite alien, primarily because of a remarkable change in our attitudes 
toward patients' autonomy and their need for information. This change has 
come about not from advances in scientific medicine, but from a much broader 
change in concepts of authority and trust in American society as a whole. 

Most of the ethical uncertainty that I experience in an average day's work 
arises from this new, and proper, acknowledgment of the vital role of informed 
consent. Whether I ha\'e truly informed a patient and whether the patient has 
truly consented pro\'es much more elusive than it would seem to be in the ubiq- 
uitous forms now used to "document" the process. Nevertheless, expanding the 
quest tor informed consent can ha\'e some marvelous and comforting results, as 
one of our contributors points out: properly informed and given their choice, 
some patients will opt to receive less care rather than take it from someone who 
has a greater need. This is just one row of dots the authors of this issue connect 
for us as they guide us through some of the complexities of medical ethics today. 


William Ira Bennett '68 


Paula Brewer Byron 


Phylli.s L. Fagell 


Beverly Ballaro, PhD 


Elissa Ely ' 


Elissa Ely '88 

Robert \I. Goldwyn '56 

Joshua Hauser '95 

Paula A.Johnson '84 

Perri Klass '86 

Victoria McEvoy '75 

James J. O'ConneU '82 

Gabriel Otterman '91 

Deborah Prothrow-Stith '79 

Guillermo C. Sanchez '49 

J. Gordon Scannell '40 

Joshua Sharfstein "96 

Eleanor Shore '55 
John D. Stoeckle '47 


Laura McFadden 


Sharon B. Murphy '69, president 
Charles J. Hatem '66, president-elect 1 

Paul J. Davis '63, president- elect 2 

Stephen G. Pauker '68, vice president 

Maria C. .Alexander- Bridges '80, secretary 

James B. Field '51, treasurer 


Claire \'. Broome '75 

Paul Farmer '90 

B. Lachlan Forrow '83 

Michael A. LaCombe '68 

Eric B. Larson '73 
Gina Moreno-John '94 

Deborah J. Oyer '87 
DeWayne M. Pursley '82 

Morton N. Swartz '47 
Nanette Kass Wenger '54 


Daniel D. Federman '53 


Nora N. Nercessian, PhD 


Chester d'Autremont '44 

The HanardMcdka] Ahmm Bulletin is 

published quarterly at 25 Shattuck Street, 

Boston, MA 02115 ■' by the Harvard 

Medical Alumni Association, 

Phone: (617) 432 1548 . Fax: (617) 432 0013 


Third class postage paid at Boston, 

Massachusetts, Postmaster, send form 3579 

to 25 Shattuck Street, Boston, MA 02115 

ISSN 0191 7757 • Printed in the U.S.A. 




Balancing Acts 

Thank you tor the music and medicine 
issue, which is, to my mind, head and 
shoulders above anything else the Bulletin 
has ever done. 

I have been distributing copies to 
friends — musicians; premedical advisees, 
physicians, and nonmedical scientists 
who are trying to integrate music into 
their li\'es; music teachers; performing 
arts medicine specialists; and others who 
are trying to lead balanced li\'es. Your 
generosity in sending extra copies has 
saved me from ha\'ing to commit an illc 
gal act with a photocopier. 

Connie Tomaino, who is cited in 
Samuel Wong's article, has edited a 
monograph. Clinical Applications of Music m 
Neurologic Rehabilitation (MMB Music, 
Inc., St. Louis, MO, 1998). The mono- 
graph contains a chapter by Oliver Sacks 
entitled "Music and the Brain." 

When I was eight or ten years old, my 
father brought home a collection of 
Bach organ works performed by Albert 
Schweitzer. At the time, I couldn't fig- 
ure out why on earth a physician would 
want to be a Bach scholar. Now I know. 


Editor's note: This year is the 125th 
anniversary of Albert Schweitzer's birth 
and the 250th anniversary of J. S. Bach's 
death — two anniversaries that HMS 
plans to commemorate in the fall with a 
single event. 

Food for Thought 

Catching up on my reading, I just 
devoured your summer issue from 
cover to cover. Many thanks to a 
the contributors! 


The Surgeon and the Composer 

I found the summer issue ol 
the Bulletin to be fascinating. 
As a phy.sician working in 

internal medicine and hematology, I am 
very interested in the connections 
between music and medicine. Among 
the famous physicians who were also 
musicians was Thcodor Billroth 
(1829-1894), an outstanding surgeon, 
pathologist, professor, and mentor at 
Wien Medical School. Billroth was a 
close friend of Johannes Brahms, who 
dedicated his first two string quartets 
(Opus 51, Nos. 1 and 2) to the famous sur 
geon. I have presented, several times, a 
special lecture about their relationship, 

showing many pictures and playing 
selections from Brahms's work. 

I want to congratulate you on this 
\'ery interesting and prc)\'ocativc issue. 


The Beats of Different Drummers 

Congratulations on 

the publication of 
the summer issue. It articulated and 
amplified a subject in which I have been 
interested 'for the past 25 years. Music 
has been used for healing since early 
times, yet its study is neglected today. 

The "Mozart effect" — which suggests 
that children may increase their IQs by 
listening to the music of certain com- 
posers — has awakened a renewed inter- 
est in the effects of music. For eons, alter- 
natix'e medicine, which incorporates the 
healing arts of many cultures, has recog- 
nized the many depths of healing. 

My own return to music was sparked 

by my "inidlife crisis," in which I reject- 

^ cd the coping mechanisms then in 

^ \'oguc — such as jogging, changing 

wi\'es, or wallowing in narcis- 

sism — and turned to 

, popular music, rather 

J Hai'Vcird MetllCai than the clas,sical genre 

^ ^^~ in which I was raised. 

•^^ <t^_ At the time, my 

"^j* ' iJH^^^ mother was in a nursing 
home with severe 
Alzheimer's disease. I 
would play the piano 
for her and her fellow 
residents, evoking many 
mixed reactions. Some 
medicated patients 
ould emerge from their stupor and 
seem to enjoy the sounds. Others would 
become hyperactive and outraged (prob- 
ably the true music lovers). I was sur- 
prised that when I varied the tonalities 
and rhythms, I would elicit a 
range of emotional and physical 
responses, even in heavily med- 
ated patients. 

Were their responses 
caused by conditioning or 






the actual sounds? After .ill, I was playing 
ragtime and jazz — the "brothel music" ot 
their early days. Were their responses 
physical? Cultural? Did they involve aes- 
thetic judgment? One woman became 
overtly hostile to my playing, but when I 
switched to a folk song of her culture, 
she became docile. 

The most interesting case was a man 
with catatonic schizophrenia who was 
taken to a porch where a jazz band was 
playing. At the first notes, he became 
responsive and remained so until the 
music stopped, at which time he 
resumed rigid catatonia. 

At our 45th reunion, when Dr. Gerald 
Fischbach's group presented newer 
work in neurobiology, one of the lectur- 
ers spoke about cocaine 
addiction. He stated that 
recovered cocaine addicts 
might relapse if exposed to 
the music they had heard 
while in the drug culture. 
Apparently such a relapse 
is not the case with hero- 

in, marijuana, or other addictive sub 
stances. I asked if anyone had tried to use 
music as a desensitizing agent. As I 
recall, no one had. 

I found the responses of surgeons and 
anesthetists to the playing of music in 
the operating room to be fascinating. 
But I wonder if doctors shouldn't be 
caretul, because their patient,s' reactions 
to music in the O.R. might influence 
postoperative results. I would hesitate 
to guess what my own vital signs would 
do if the "wrong" music were played 
while I was anesthetized. These obser- 
\'ations certainly warrant study. 

Again, congratulations to all hands 
for producing a groundbreaking issue. I 
think the watchwords should be, 
"everyone has his ov\'n song." 


In the Spirit of Healing 

delighted in reading "Musical 
Healing" by Samuel Wong in the 
summer issue. Despite the lack 
of uni\'ersal improvement 
from music therapy, as 
alleged by Christopher 
Chabris, the anecdotes 
that Dr. Wong describes 
so \a\'idly are impressi\'e. 
1 understand that 
most of our early Ameri 
can universities, includ- 
ing Harvard, were begun by Christians. 
When I was a medical student in the 
1940s, we were taught "scientific medi 
cine"; when taking patients' medical 
histories, we were careful to include 
any psychological manifestations yet 
rarely inquired into their spiritual 
Uves. In recent times, spirituality 
has been shown to be very signit 
icant. Through his personal faith. Dr. 
Paul Tournier of Switzerland came to 
recognize what he caUed the "m)'s 
tcry ot the person," and he iiiflu 
encecl man)' European physicians, 
who came to reahze the signifi- 
cance of spirituahty in disease. 

Cerebral /y 

How do the mtntolure orcheslros 
in our brains translate music? 

by Debra Malika 

Har\ard"s own Dr. Herbert Benson 
was one of the first in this country to 
perform careful medical research on the 
physiological effects of meditation. He 
showed that lower blood pressure, a 
slower heart rate, and a lower metabohc 
rate could be achieved. In his book Wired 
for God, he claimed to ha\'e "found that in 
every nation, in every religion, the results 
were the same... there was transforming 
power in prayer." 

Scientific controlled studies have 
since corroborated this statement. Dr. 
Larry Dossey has written in HcalingWords 
that he decided — after a thorough search 
of the literature regarding spiritual influ 
ences on heahng — that not to employ 
prayer with his patients was the equiva- 
lent of "deliberately withholding a 
potent drug or surgical procedure." 

The medical schools at Harvard, Yale, 
Dartmouth, Johns Hopkins, and many 
other universities recognize benefits 
from prayer, personal faith, church 
attendance, and meditation. I have a 
bright 16 year -old grandchild who, at 
age of six months, was cured by prayer 


of a highly maUgnant brain tumor that 
had been confirmed by pathologic study. 

Dr. Paul Brand, surgeon, missionary to 
lepers in India, and author of Fearfully and 
W'ondcrjullx Made, has taught that four 
states affect pain and our immune sys- 

Persistent anger makes worse, and 

forgiveness better 

Fear makes worse, and peace and 

reassurance better 

Loneliness makes worse, and 

visitation better 

Inactivity makes worse, and activity 


Health providers, friends, and our 
own lifestyles can significantly benefit 
from these considerations. Dr. Wong is 
to be congratulated for bringing "Musi- 
cal Healing" to our attention. 


Musician, Heal Thyself 

In your fascinating issue on music and 
medicine, you missed the Longwood 

Symphony Orchestra — "the orchestra of 
Bostons Medical Community." Many 
HMS faculty physicians, students, post- 
docs, and alumnae/i contribute to some of 
the sweetest sounds at New England 
Conservatory's Jordan Hall, where con 
certs benefit cancer research, student 
medical mentoring programs, birth defect 
and substance abuse prevention pro- 
grams, etc. When Yo-Yo Ma played with 
the Longwood Symphony in the 
Schweitzer Re\'erence for Life Concert, 
his benefit performance was conditioned 
upon free tickets for homeless people. The 
Longwood Symphony has played at HMS 
for the Urban Health Project and at the 
Harvard Club for the Aesculapian Society 
The Longwood Symphony; its presi- 
dent, Lisa Wong, a pediatrician at 
Massachusetts General Hospital; and 
Musical Director Francisco Noya pro- 
vide a fine opportunity for physicians to 
"heal themselves" while serving the 
broad HMS community. 


Editor's note: The connections between 
music and medicine are very rich, espe 
cially at HMS. We greatly regret the fact 
that space constraints kept us from pro- 
filing the Longwood Symphony Orches- 
tra, the Harvard Medical School Music 
Society, and all of the many alumni who 
are gifted musical performers. 

Striking the Right Chord 

Congratulations on your music and 
medicine issue! l\e been invol\"ed with 
numerous publications covering this 
topic, and none has done it as well as you 
and your staff. A number of colleagues 
ha\e asked for copies of the issue. 


Editor's note: Dr. Tramo pointed out an 
error in the article that featured his 
work: in the last paragraph of page 26, 
"medulla oblongata" should have been 
"amygdala." We regret the error. 

The Sound of Music 

The summer issue of the Bulletin res- 
onated with special, fond memories of 
how music mixed with medicine during 
my HMS years from 1971 to 1975. Indeed, 
X'anderbilt Hall seemed to be a muse for 
many of us. Along with three other stu- 
dents, I was drawn to the courtyard's 
natural acoustics as an ideal venue for 
Christmas carols by an impromptu 
brass quartet. A few serious students 
objected to our disturbing the silence, 
but many more welcomed the brief 
diversion and engagement with the 
spirit of the sea.son. Assuming that the 
acoustics have not changed in the inter- 
vening decades, and as long as the pub- 
lic peace is not unduly disturbed, I 
highly recommend the courtyard for 
chamber music performance. 


The Bulletin welcomes letters to the editor 
Please send letters by mad (Harvard 
Medical Alumni Bulletin, 25 Shattuck 
Street, Boston. Massachusetts 02115): 
fax (617'432'OOB): or emad (bulletin&>hms. Letters may be edited for length 
or clarity. 



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President's Report 


the Alumni Council, 
which was held 
October 28 and 29, 
marked the begin 
ning of a special year 
celebrating "Har- 
vard Medicine at the Millennium." 

Serious planning for the year ahead 
had actually begun last June during 
Alumni Week, when former Council 
President George Thibault '69 and 1 
discussed the possibility of greater 
coordination and year- to year conti- 
nuity in planning Alumni Council 
affairs. To this end, before the fall 
meeting, the newly formed Alumni 
Council Executive Committee, also 
known as the Presidents" Group — 
consisting of George Thibault, the 
next two presidents- elect (Charles 
Hatem '66 and Paul Davis '63), and 
me — met with Daniel Federman '53, 
director of alumni relations, and Nora 
Nercessian, assistant dean for alumni 
affairs and special projects, to set 
future priorities for the Council. 

At the fall meeting, the Council dis- 
cussed special programs to mark the 
millennium. We also heard an update 
on events already scheduled for the 
coming year. Highlights include a 
number of invited lecturers; research 
symposia, including a public event on 
the subject of "Brain Science at the 
Millennium"; and a major retreat on 
the topic of "Clinical Education for 
the New Millennium," which will deal 
with the challenges of integrating 
informatics, technology, genomics, 
and social issues into the curriculum. 

Council members then reviewed 
the School's finances and the role of 
alumni giving in maintaining the 
financial health of HMS and its stu 
dents. Leading these discussions were 
Paul Levy, executive dean for adminis- 
tration; Mary Campion, clean for 
resources; and Tenley Albright '61, 

chair of the Alumni Fund. Although it 
represents only a small percentage of 
the overall HMS budget, alumni giv- 
ing is clearly an important component 
of student scholarship support and 
the dean's discretionary funds. 

The Council considered reconsti- 
tuting its Alumni Survey Committee 
(which has been inactive in recent 
years) in order to survey HMS alumni 
at the millennium. The last sur\'ey was 
conducted a decade ago, and the con- 
cept of taking a snapshot of what our 
alumni are doing and thinking at the 
turn of the century held great appeal 
for Council members. The survey 
results would likely be of considerable 
interest, meriting dissemination not 
just within the HMS family, but also to 
the pubhc. Time did not permit us to 
finalize planning for the sur\'ey. .Alum- 
ni volunteers interested in working on 
it should contact me. 

The rest of our meeting was con- 
sumed with planning an Alumni 
Council/Town Meeting to be held in 
Washington, DC on March 17 and 18. 
The decision to take the Alumni 
Council "on the road" and involve 
locally prominent alumni in the event 
is the Council's effort to engage ixlum- 
ni from around the country. We hope 
to start a national dialogue about 
issues of concern to alumni, about 
either HMS or their professional lives. 

As always, the Council members 
welcome your views, as our goals are 
to present alumni opinions and rec- 
ommendations to the administration 
and faculty of HMS, and to promote 
alumni interests and fellowship. Feel 
free to contact Dan, Nora, or me 
through the Office of Alumni Affairs 
(phone: 617 432 1560; email: alumni_ ■ 

Sharon B. Murphy '69 is chief of the Division of 
Hematology' Oncolog}' at Children's Memorial 
Hospital m Chicago. 





New Cancer Center Launched 

MS IS JOINING WITH FIVE OF occupy nearly 500,000 square feet of 

its affiliated hospitals and space at the institute, 
the Harvard School of Pub The institutions have already com 

lie Health to fight cancer. mittcd significant funds to create or 

The combined effort, the largest private enhance more than a dozen core facili 

cancer-research initiative in the United ties — ranging from DNA sequencing 

States, has taken the name Dana Far operations to pathology laboratories — 

ber/Harvard Cancer Center (DF/HCC). which will be available to all members. 

The collaborators, which conduct more These core facilities tend to be large, 

than $235 million in cancer-related highly instrumented laboratories that 

research each year, include Dana- Farber are too expensive for any one researcher, 

Cancer Institute, Beth Israel Deaconess or often any one institution, to initiate. 

Medical Center, Brigham and Women's Other core facilities provide non-labo- 

Hospital, Children's Hospital, and ratory services, such as health commu- 

Massachusetts General Hospital. nication to high-risk populations. 

"One primary goal 
for this center is to 
take advantage of cur 
rent trends in bio 
medical science that 
focus upon multidis 
ciplinary research to 
yield exciting new 
advances," said HMS 
Dean Joseph Martin. 
"The new center is 
already creating this 
research synergy 
because we know re- 
searchers have found each other through 
its programs who would not ha\c through 
our old .system." 

"All of the DF/HCC member institu- 
tions conduct incredible basic, clinical, 
and population-based research," said 
Dana Farber President David Nathan. 

David Nathan (left) and Joseph 
Martin join forces 

The initial phase of 
the DF/HCC has cre- 
ated disease-based 
programs for five 
t\'pes of cancer: breast, 
gynecologic, leukemia, 
lymphoma, and pros- 
tate. As these pro 
grams move forward, 
the center will be 
developing coUabora 
tive programs for 
seven other types of 
cancer: brain, gas- 
trointestinal, head and neck, skin, soft tis- 
sue sarcomas, lung, and AIDS-related 

The five existing disease-based pro 
grams are designed to interact with ten 
discipline-based programs: biostatistics, 
cancer cell biology, cancer genetics, can 

"Now we will have the mechanisms to cer immunology, viral oncology, cancer 

knit these efforts together to share 
resources and coordinate our efforts in a 
more focused and efficient manner." 

Martin and Nathan initiated discus 
sions about the collaboration more 
than two years ago. By the spring of 
1999, more than 800 Harvard faculty 

epidemiology, risk reduction, outcomes 
research, cancer imaging, and experi- 
mental therapeutics. Another nine disci- 
pline based programs are envisioned for 
de\elopment over the next few years. 

Its founders hope the center's struc 
ture will enable researchers from all dis 

based at the various institutions had ciplines to synthesize the amount of 

signed on as center members. More information generated by individual 

than half of those researchers have studies. They also hope it will .speed 

already begun collaborations. Activi- researchers' efforts to develop new inter 

ties under the DF/HCC banner will vention strategies. ■ 

Shifts in Medical 
Education Leadership 

the University of California, San Fran- 
cisco (UCSF), will become the new 
HMS dean for medical education on 
July 1 . He will succeed Daniel Feder- 
man '53, whose administrative career 
at HMS has spanned two decades. 

Lowenstein is currently professor of 
neurology, anatomy, and neurosurgery 
at UCSF. He directs the Epilepsy 
Research Laboratory and attends at 
San Francisco General Hospital. In 
1998, he won the prestigious Alpha 
Omega Alpha Robert J. Glaser Distin- 
guished Teacher Award from the Asso- 
ciation of American Medical Colleges. 

"We are indeed fortunate to have 
Dan Lowenstein come back to Har- 
vard," says Dean Joseph Martin, who 
worked with Lowenstein as chancellor 
of UCSF. "He is the quintessential edu- 
cator, a great favorite of the students, 
and a fine physician-scientist." 

"I am thrilled that we have been 
able to get Dan Lowenstein to return to 
HMS," Federmon adds. "There has 

continued on page 8 

Lowenstein will become the new 
dean for medical education in July. 


X L J I i IK ; Tj 


Medical Education Leadership (continued from page 7) 

never been a more promising — and 
simultaneously more challenging — time in 
medicine, in science, and in their social 
setting. Dan has shown outstanding 
accomplishment across that whole spec- 
trum, and our students, faculty, educators, 
and staff are all fortunate to have a new 
leader of his caliber." 

Lowenstein, in turn, lauds Federman's 
legacy. "The prospect of following in the 
footsteps of Dan Federman is both hum- 
bling and daunting, but I am delighted to 
enter into this role as a beneficiary of his 
great leadership," he says. "My visits to 
Boston over the past few months, after 
being away for so long, have been 
pleasant reminders of the extraordinary 
qualities of the people here at HMS. I 
look forward to renewing many old 
friendships and establishing new ones, 
and I am raring to get started." 

Lowenstein's basic scientific research 
focuses on the molecular and cellular 
changes in neural networks following 
seizures. He and his colleagues devel- 
oped animal models to study responses 
to seizures and have identified changes 
in the expression of a variety of genes. 

Federman is not so much stepping 
down as stepping aside. In September, 
Martin appointed him as senior dean for 
alumni relations and clinical teaching, a 
position in which he will work with alumni 
to increase scholarship funds and help 
conduct a review of the third- and fourth- 
year curriculum. 

Federman served on the School's facul- 
ty from 1960 to 1972. Following a five- 
year stint at the Stanford University School 
of Medicine, he returned to HMS as dean 
for students and alumni and, since 1 989, 
dean for medical education. ■ 

Building D Gets a New Name 


exterior of Building D in honor of a generous benefactor. The new 
name will be the Count Giovanni Auletta Armenise Medical 
Research Building. 

The Giovanni Armenise-Harvard Foundation was established in 1997 to nur- 
ture research and education in cellular and molecular biology, and to foster col- 
laboration between researchers at HN'IS and those in Italy. The founda- 
tion supports the exploration of fundamental questions in biology 
based on the conviction that such discoveries will lead to signifi- 
cant advances in health care and agriculture. 

The foundation has funded four new Centers for Advanced Sci- 
entific Research at Harvard, as well as new programs at fi\'e 
selected centers of scientific excellence in Italy, wdth the intent of 
pairing scientists and laboratories to encourage intellectual 
exchange and collaboration. 

Armenise's interest in HMS began when his wife, 
Dianora Bertacchini, was treated at Massa- 
chusetts General Hospital for a brain 
tumor. They both belie\'ed that the 
answers to questions posed by her 
ilLness lay in basic research, and 
they agreed on the concept of start- 
ing a research foundarion before her 
death in 1994. ■ 


New Clinical Exam 


time, all fourth-year HMS 
students took a stand- 
ardized, comprehensive 
clinical examination. .Although HMS 
students have received extensi\'c clini- 
cal training by their fourth year, this 
was the first such exam the students 
have taken as a class. 

Developed as an annual event 
based on the objective structured 
cbnical exam (OSCE) format, the 
evaluation was established for ^ 
several reasons. The National 


REACHING OUT: As part of 
the School's Global Hormo- 
ny/Ebert Community Service 
Day festivities on October 7, 
Sheela Rao '01 performed 
a classical Indian dance. 

4 <*° 


-J r 


Board of Medical Education is plan 
ning to institute an OSCE as part of 
the Step II licensing examination, 
beginning in 2001. The test will help 
prepare students for future OSCEs, 
increasingly used by specialty boards 
and residency programs, and it will 
help educators pinpoint weaknesses 
in the curriculum. The OSCE will 
also provide an objecti\'e, standard- 
ized measure of students' skills and 
ensure that they can apply their 
knowledge across several disciplines. 
The fourth-year OSCE was held 
over eight days, with 18 to 20 stu- 
dents taking part e\'ery day. Each 
student completed nine stations, 
which represented a variety of clini- 
cal settings, such as the emergency 
room or ambulatory care clinic. One 
or two HMS clinical faculty examin- 
ers were on hand at each station, for 
a total of 129 faculty members over 
the course of the exam. Six stations 
had "standardized patients," people 
trained to simulate ailments, play 

summer, for the first time, 
fourth-year HMS students took 
a standardized clinical exam. 

patient roles, and give feedback. The 
other three had materials to be inter 
preted, .such as lab results or x-rays. 

The skills that were tested included 
history taking, physical examination, 
differential diagnosis, patient educa- 
tion, test interpretation, clinical reason- 
ing, and treatment planning. At the end 
of each session, the examiners and stan- 
dardized patients evaluated the stu- 
dent's performance and gave feedback. 

The exam was well recei\'ed by the 
OSCE participants — faculty and stu- 
dents ahke. Valerie Pronio-Stelluto, a 
faculty examiner, said, "It is a pleasure 
to see these bright students evolve 
into young physicians." Typical com- 
ments from faculty examiners on eval- 
uation forms included: "A wonderful 
experience for examiner and student." 

Eourth-year students seemed to 
enjoy the exam, too. "This was fantas- 
tic," one student wrote. "Feedback 
was so helpful." For many, it was a con- 
fidence builder. Said another student; 
"Even though I dreaded taking this, I 
found it to be a productive exercise 
and actually enjoyed it." ■ 

HMS at the Millennium 


ing the new millennium 
with a series of events that 
highlight past adx'ances 
and future opportunities in medicine. 
HMS has worked with the Har\'ard 
School of Dental Medicine to design the 
program, entided "On the Threshold — 
Han-ard Medicine at the Millennium." 
Events explore issues ranging from 
brain science and research trends in 
aging to information technolog) in the 
New Pathway. For details, visit the Web 
site at 
Threshold/index.html. ■ 


Alumni Events to 
Mark the Millennium 

What progress are we making in gene 
therapy? What new imaging tech- 
niques ore being used? What is com- 
putational genetics? To update alumni 
about clinical advances, research 
accomplishments, and proposed pro- 
grams, the Harvard Medical Alumni 
Council will host a two-part seminar on 
the Quadrangle. "HMS at the Millenni- 
um; What's New and What's Happen- 
ing in and around the Quadrangle" 
will take place on October 20 from 
3:00 to 5:30 p.m. and October 21 
from 1 0:00 a.m. to 1 2:30 p.m. CME 
Category 1 credit will be available. 

For more information, call Tenley 
Albright '61 at 61 7-247-8202, or 
email her at Tenley 1 


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R E N C H M A R K S 


New Fronts in Attention Deficit Hyperactivity Disorder 



hyperacti\ity disorder (ADHD) 
has been fraught with contro' 
versy lately. Are too many 
incorrectly diagnosed with 
ADHD? Are children with the disorder 
overmedicated? Can stimulants lead ado- 
lescents with ADHD to abuse their pre- 
scriptions or take street drugs? 

HMS researchers have made impor- 
tant strides on the ADHD front in the 
past year, says Timothy Wilens, associate 
professor of psychiatry at Massachusetts 
General Hospital (MGH). These advances 
include studies on novel treatments, a 
budding effort to develop a biologically 
based diagnosis for the disorder, and 
early research on possible genetic com- 
ponents of the disease. 

ADHD is the most common cognitive, 
emotional, and behavioral disorder treat- 
ed in children. About 25 epidemiological 
studies in different countries estimate 
that it affects approximately 4 percent of 
children and adolescents. Medication, 
mostly with stimulant drugs and tri- 
cychc antidepressants, is a mainstay of 
ADHD treatment, along with psycho- 
therapy and behavior modification. 

One misperception, says Wilens, is 
that ADHD is overtreated. Fueling this 
concern are isolated cases, such as a well- 
publicized study in September 1999 that 
found that almost 20 percent of white 
male fifth-graders in one \'irginia district 
were on medication. From a public 
health perspective, however, Wilens 
believes that ADHD remains undertreat- 
ed, especially in light of recent data 
shoring up the usefulness of drug thera- 
py. For instance, he explains, Massachu- 
setts Medicaid records indicate that less 
than 1 percent of children in that pro- 
gram receive ADHD medication. 

Along with Joseph Biederman, HMS 
professor of psychiatry, and other 
researchers in the MGH Pediatric Psy- 
chopharmacology Unit, Wilens is 
studying the effects of many psychi- 

atric drugs in children, adolescents, 
and adults. In December 1999, Wilens 
and his colleagues described in the 
American ]ouma} of Psychiatry the initial 
results of a clinical trial of a new class 
of drugs to treat ADHD. Although the 
biological cause of ADHD remains 
unclear, most research points to insuffi- 
cient norepinephrine and dopamine 
activity in the frontal cortex and stria- 
tum areas of the brain. Indeed, most 
medications used for ADHD target 
dopamine and norepinephrine. 

The new drug (ABT-418) doesn't tar- 
get dopamine, but instead acts through a 
different path of the brains chemistry. 
Developed by Abbott Laboratories, 
which supported the MGH researchers, 

it is a chemical relati\'e of nicotine. Tout- 
ed as a kind of "designer nicotine," it 
stimulates attention without exerting 

nicotine's dangerous effects. Wilens says 
the compound intrigued him because it 
has been found that teenagers and adults 
\\ ith ADHD smoke at twice the rate of 
the general population. 

WUens and his colleagues at MGH 
tested the compound in 29 adults with 
ADHD in a double-blind, placebo-con- 
troUed trial. After sLx weeks, 40 percent of 
those recei\ing the test substance and 13 
percent of those on placebo were "much" 
or "\'ery much" impro\'ed. The compound 
worked preferentially better on the atten- 
tional s)Tnptoms of ADHD compared to 
the hyperacti\it)' or impulsi\it)'. 

Scientifically, this compound breaks 
new ground. Broadly speaking, the 
brain has two major neurotransmitter 

STRAIGHT TALK: Timothy Wilens recently wrote a book to help parents sort through 
the agonizing pros and cons of putting their children on psychoactive drugs. 



systems relevant to ADHD: the cate- 
cholaminergic system, which includes 
dopamine, and the choHnergic system, 
in which so-called nicotinic receptors 
are one of two major recipients of the 
neurotransmitter acetylcholine. Nico 
tine binds these receptors, as does the 
new compound. The drug is presumed 
to mediate between the two systems. 

"This is one of the first times that a 
cholinergic agent proved in a clinical 
trial to be effective for ADHD," says 
WUens. "This new class of agent is 
worth im'estigating in larger studies, 
because it helps with some of the symp 
toms that do not respond well to the 
standard ADHD medications." 

Even if larger studies confirm these 
results, it remains to be seen whether the 
findings will have any implications for 
ADHD in children. Wilens believes they 
will, explaining that he and his col- 
leagues have extensix'e nev\' data show- 
ing that people with ADHD have consis- 
tent respon.scs to medications through- 
out their hves. 

This consistency touches on another 
controversial point — ADHD among 
adults. "The drug responsiveness data is 
further e\'idcnce," Wilens says, "that 
whatever brain defect we are talking 
about in children really does continue 
into adulthood." 

The Promise of Objective Diagnoses 

Do you ever fail to pay close attention to 
details? Have difficulty organizing 
tasks? Lose things? Interrupt others? 
Although these are some of the ADHD 
symptoms listed in the diagnostic man- 
ual DSM'V, admitting to these failings 
probably does not mean you have the 
disorder. And these examples suggest 
just how easily local pockets of over- 
diagnosis can occur. 

"We would lo\'e to ha\'e a biologically 
based diagnosis," says Wilens. He may 
soon get his wish. In a research letter 
published in The Lancet in December 
1999, Harvard scientists describe a 
potential tool to reveal ADHD — an 

imaging method they devel- 
oped to diagnose Parkin- 
son's disease. 

Alan Fischman, associate 
professor of radiology at 
MGH, worked with Bertha 
Madras, professor of psy- 
chobiology in the Depart- 
ment of Psychiatry at the 
New England Regional Pri- 
mate Research Center, to test 
a SPECT imaging agent that 
can detect and quantify in 
a person's brain a protein 
called the dopamine trans- 
porter. This transporter can 
do diagnostic double-duty 
because it vanishes as dopa- 
mine neurons die in Parkin- 
son's, yet is ele\'ated in people 
with ADHD. The transporter 
is already the target for 
the drug methylphenidate 
(Ritalin) and has been 
implicated as a cause of 

This initial trial included 
only sLx adults with pre\i- 
ously diagnosed ADHD. The 
results, howe\'er, w^ere clear. All six had 
dopamine transporter levels in their stria- 
tum that were roughly 70 percent higher 
than controls, and there was no o\'erlap 
between cases and controls. 

Further trials are being planned, says 
Madras, adding that, e\-en if all goes well, 
the test will not be brought to the mar- 
ket for several years. 

Jury Still Out on ADHD Genes 

Four scientific groups have indepen- 
dently imphcated the dopamine receptor 
4 gene in ADHD. In May 1999, Steven 
Faraone, HMS associate professor of psy 
chology, and researchers in the MGH 
Pediatric Psychopharmacology Unit 
described in the American Journal ofPsychi 
atry how they found that the presence of 
a certain allele of this gene predicted the 
disorder in 27 triads of an ADHD adult, 
his or her spouse, and an affected child. 

THROUGH THE AGES: Researchers are studying the 
effects of psychiatric drugs in children, adolescents, and 
adults with attention deficit hyperactivity disorder. 

Intriguingly, in 1998, researchers in 
Arizona cast suspicion on a polymor 
phism of the dopamine transporter, a 
channel that removes excess transmitter 
from the synaptic cleft. Fischman and 
Madras have imaged this protein in their 
diagnostic study. 

It is important to remember, however, 
that in psychiatry many attempts to link 
genes to diseases have subsequently been 
refuted. .Alcoholism and .schizophrenia 
are just two examples of diseases for 
which genetic links could not be con- 
firmed. And in this case, too, researchers 
at other institutions have reported that 
they cannot replicate the dopamine 
receptor connection. 

Most ADHD research occurs amid 
controversy, so it is fair to assume that 
pas.sionate debate will continue as more 
data on the genetics of ADHD emerge. ■ 

GahricUc Strohcl is a science writer for Focus. 




■ •^■^K+BsJ.*- 


Dramatic breakthroughs in reproductive technology are 
creating miracle babies — and raising tough ethical issues 


a miscarriage, and months of infertility treatment, 
Maureen Connelly suddenly found herself "too pregnant." 

Connelly, then 34 and diagnosed with endometriosis, 
had produced seven embryos from prior procedures 
with her husband, Jeffrey Krane, using in vitro ferriliza- 
tion (IVF). 

Six of their frozen embryos survived the thawing 
process, and they had them aU implanted, both "by 
choice and by ignorance," Connelly says. "There was a 
lower chance of pregnancy with frozen embryos. Also, 
we incorrectly thought they all had to be thawed simul' 
taneously. Because we were physicians ourselves, I thin] 
certain assumptions were made about our knowledge." 

When the technician performed the ultrasound six 
weeks later, he looked at the couple. "Are you ready for 









cradles her newborn 
son, Harry, who >vas 
born ten weeks early 
weighing only one 
pound, seven ounces. 

"In 1980, donor insemination for a single woman was an 
to issues we deal with now. In ten years we'U be wrestling with 

three?" he asked. Within an hour, they 
met with a genetic counselor to discuss 
the imphcations of having triplets and 
the pros and cons of multifetal preg- 
nancy reduction. 

With existing and emerging assisted 
reproductive technologies (ART) chang- 
ing the landscape of fertility medicine, 
patients like Connelly must na\igate a 
maze of treatments with acronyms like 
treatments that have collectively led to 
the births of more than 70,000 babies in 
the United States. At the same time, pro- 
fessionals working in the field — includ- 
ing reproductive endocrinologists, urolo- 
gists, obstetricians, neonatologists, men- 
tal health clinicians, scientists, nurses, 
and ethicists — are grappling with 
increasingly complex ethical questions. 

"Those we met with belie\'ed a twin 
pregnancy would be better for the 
babies and for me," Connelly says. "But 
they told us that 95 percent of triplets 
were healthy. We liked the odds. Then 
we saw an ultrasound at ten weeks and 
saw all three babies mo\ing. That elimi- 
nated the possibility of selective reduc- 
tion for me." 

Unfortunately, by 18 weeks Connelly 
knew one baby was developing more 
slowly than the others. Her son Joshua 
"basically starved for oxygen in the 
uterus," she says. He was born at 35 weeks 
with autism and cerebral palsy. The other 
two, a boy and a girl, are healthy. 

"Joshua is very disabled," Connelly 
says. "When we took him home, we 
could see he was developing differently. 
He resisted being cuddled and had 
trouble making eye contact." 

Despite the challenges, Connelly says 
she wouldn't trade her situation for any- 
thing. "We have a beautiful outcome." 

Not a Static Field 

In a waiting room at Boston IVF, 
patients seeking infertility treatment 

wait to be called. On any gi\'cn day, 
these patients may include a woman 
with breast cancer who wants to post- 
pone chemotherapy in order to take fer- 
tihty drugs and freeze embryos, a les- 
bian who wants to use a gay friend's 
sperm to concei\'e a baby, or a couple 
that wants an egg only from a donor 
who can give them an "Ivy League baby." 

As the technologies help increasing 
numbers of infertile couples, their care 
pro\1ders are struggling with difficult 
questions about the definitions of iden- 
tity and family, and about what consti- 
tutes good, responsible health care. 

"Assisted reproduction is not a static 
field," says Robert Barbieri 77, chairman 
of the department of obstetrics and 
gynecology at Brigham and Women's 
Hospital. "In 1980, donor insemination 
for a single woman was an ethical 
dilemma for many clinicians, but that is 
simple compared to issues we deal \\1th 
now. In ten years we'll be wrestling 
with new ethical dilemmas, probably 
some we can barely imagine today." 

Kenneth Ryan '52, chairman of the 
ethics committee of the American Soci- 
ety of Reproducti\'e Medicine and a pro- 
fessor emeritus at HMS, underscores 
how quickly the field has been evohlng. 

"When I started practicing infertih- 
ty medicine in the 1950s," he says, "our 
major tool was a thermometer to chart 
the woman's monthly temperature 
curve. We measured sperm counts and 
evaluated sperm survival on the cervix. 
We had no fertility drugs, no way of 
correcting anovulation." 

Through all the advances in repro- 
ductive technology, the object has 
remained the same, says R. Douglas 
Powers, scientific and laboratory direc- 
tor at Boston IVF and a lecturer at 
HMS. "The goal is to get one perfect egg 
from a woman that leads to one embryo 
that develops into one healthy baby." 

But currently, he explains, "most 
programs worldwide will transfer two 

or three embryos to a woman. We don't 
know whether all three or none will 
implant, and sometimes all three do." 

Life and Death in the NICU 

Neonatal intensive care units (NICUs) 
ha\'e felt the impact of the new tech- 
nologies. The risk of prematurity with 
multiple births translates into a height 
ened risk that the babies will ha\'e to be 
admitted to the NICU. "Wt've seen a 



ethical dilemma for many clinicians, but that is simple compared 
new ethical dilemmas, probably some we can barely imagine today.'' 

dramatic increase in multiple births 
from reproductive technology," says 
Steven Ringer, director of newborn 
medicine at Brigham and Women's 
Hospital. "Each year we deUver about 
15 sets of triplets, 90 percent of whom 
are products of reproductive technolo- 
gies. And about half the twins we see 
are the result of these technologies." 

If one baby in a multiple pregnancy 
is at risk, deciding v^'hen to deUver can 
pose a quandary for care pro\'iders, 

Ringer says. "You can't take one baby 
out and leave the others in. The dilem- 
ma becomes, is there a time when it's 
safer to deli\'er all three? Do you hope 
the sick one does better? Or do you 
expose the healthy siblings to all the 
risks of prematurity?" 

.although life and death issues have 
always been difficult in the NICU, ART 
and advances in care have complicated 
matters. "In the past, it was unlikely 
that you could save the baby's life in the 

first place," Ringer says. "That is rarely 
the issue now. Now it's more a question 
of saving babies, but in doing so, con- 
demning them to a miserable life. I can 
remember telling one set of parents 
that their child had a 95 percent chance 
of having terrible cerebral palsy and 
mentiil retardation, but I wasn't at the 
point of telling them to terminate care. 
I'm not sure I did the right thing." 

Emerging Technology 

Now, just five years after Connelly 
underwent infertility treatment, a rela- 
ti\'ely nev\' technique holds promise for 
helping women using ART avoid high- 
order multiple births. 

"Normally embryos are transferred 
the third day after IVF, at the eight-cell 
stage," Powers says. "Yet some of the 
embryos naturally stop growing 
between days three and five. So it's pos- 
sible on day five, when embryos in the 
laboratory turn into blastocysts, to 
select embryos with a higher probabili- 
ty of implanting. We only transfer two 
blastocysts to a patient. The pregnancy 
rates are just as high as with the day- 
three embryo transfers, but so far we 
have never had a triplet pregnancy. 

"Ultimately, I think we'll transfer at 
the blastocyst stage every time," Pow- 
ers adds. "The challenge has been that 
an embryo's metabolic requirements 
change from day three to day five. It's 
only in the last two years that we've 
been able to develop good culture 
media to make it possible." 

With fewer high-order multiple 
births, there will be less prematurity, 
but blastocyst technology is not yet as 
reliable as it needs to be, Ringer says. 
"With improvement of the technique," 
he adds, "the practice of putting in four 
embryos with the hope that one will 
take will not be as necessary. We 
would welcome the tremendous 
impact that would have on the NICU." 


"Are we being idealistic in wishing people would be motivated 
young woman for her eggs, and she sees it as her way to buy a 

Using Donor Eggs 

Success rates for IVF drop significant- 
ly as women age, says Sharon Stein- 
berg, a mental health clinical nurse 
specialist in the Center for Fertility 
and Reproductive Health at Harvard 
Vanguard Medical Associates. "The 
media mistakenly perpetuate the 
belief that IVF works for everyone," 
she says. "For women with premature 
ovarian failure or for whom IVF has 
failed, use of a donor egg may be pre- 
sented as an alternative treatment." 

The process in\'ol\'es retrieving an 
egg from a donor, fertilizing it with the 
recipient's partner's sperm, and trans- 
ferring the resulting embryo to the 
recipient. But bringing a third party 
into the reproductive equation poses 
significant ethical questions for every- 
one involved, Steinberg adds. "It's an 
unusual relationship between the donor 
and the physician, because the physi- 
cian is caring for the recipient and the 
donor is often paid. We need more dia- 
logue on a national or policy level about 
the appropriate use of this technology. 
We also need a registry of how many 
children are produced from donor eggs, 
hke the kind we keep for donor sperm." 

"Donor eggs offer an attractive alter- 
native to couples when the woman has 
diminished ovarian reserve," says Natal- 
ie Schultz, a reproductive endocrinolo- 
gist at Harvard Vanguard Medical 
Associates. "The infertile woman expe- 
riences pregnancy, and the father is the 
genetic father. 

"My concern is the industrialization 
of this treatment," she adds. "The finan- 
cial incenti\'es can be quite seductive to 
some young women. It would be ideal if 
a disinterested third party educated 
donors to ensure that they are giving 
fully informed consent. For some 
women, it may be difficult to grasp the 
future ramifications when the immedi- 
ate incentives are so tangible. It's impor- 

tant for donors to understand that their 
fertihty may be compromised, and that 
there have been no long-term follow-up 
studies on the psychological, medical, 
and fertiht)' status of these women." 

The Role of Health Core Providers 

"It's troubling to use the word 'donor," 
given the thousands of dollars that 
a couple may pay a woman for 
going through this process and gi^■ing 
her ovum," says Jeane Ungerleider- 
Springer, director of psychological ser- 
vices at Boston I\T. "Yet are we, as 
health care providers, being idealistic in 
wishing people would be motivated for 
altruistic reasons? When a couple 
offers S50,000 to a young woman for 
her eggs, and she sees it as her way to 
buy a condominium, are we to decide 
she shouldn't be a donor?" 

Ungerleider- Springer tries to sort 
out what such arrangements mean to 
everyone involved, including the donor 
and the eventual child. "It's important 
that the mental health provider in 
reproductive medicine have a voice," 
she says. "I present my assessment and 
make recommendations as one member 
of the caregiver team." 

Schultz supports her patients' deci- 
sions, but tries to help couples under- 
stand any issues that may not be readily 
apparent. For example, she explains, 
"with egg donation, you can create 20, 
30, 40 half siblings, and it eventually may 
be possible for these siblings to search. 

"I believe insurance should cover 
adoption," she adds. "People might be 
happy to adopt, but since Massachu 
setts insurance pays for egg donation, 
there's a huge financial incentive to 
pursue this technology." 



for altruistic reasons? When a couple offers $50,000 to a 
condominium, are we to decide she shouldn't be a donor?" 

With adoption, Schultz explains, 
"there's an agency that advocates for 
the baby and birth mother. With donor 
gametes, there is no ad\'0cate or follow- 
up of the donors or offspring. No one 
knows what it means for a child to have 
a 63'yearold mother, or to be told he 
has half sibhngs, or to find out that the 
genetic mother was paid S6,000 for her 
eggs. The sale of blood and organs has 
been outlawed in e\'ery other field of 
medicine. It is unclear why eggs should 
be a\'ailable as a consumer commodity." 

Consanguinity is another one of her 
concerns. "You cant freeze eggs, so the 
gametes cant be stored and shipped 
around the country as with sperm 
banks," Schultz says. "The children are 
all born locally," she adds, relating the 
story of an I\ F nurse who w atched two 
children, offspring of the same egg 
donor, playing together in a play- 
ground. The parents had no idea the 
children were hall siblings. 

"There is no registry of how many 
times a woman has cycled, and of how 
many babies are born immediately and 
later with stored frozen embryos," 
Schultz adds. "I'm not against the use of 
egg donation. I'm against the abuse. It is 
a good treatment, but hke all treat- 
ments, it should be used judiciously." 

Diane,* a 46 year- old mother of a 
three-year-old girl concei\'ed using a 
donor egg, did not care if her donor was 
motivated by money. 

"My biggest concern, other than 
weeding out those with physical dis- 
eases, was how comfortable the donor 
would be if my baby sought her out," 
Diane says. "She was 27 at the time 
and had two children. As another 
v\orking mother, I could appreciate 
her wanting to donate both to earn 
money and to share." 

Diane, who chose egg donation o\er 
adoption because her insurance cov- 
ered the procedure, did ha\e other con- 
cerns. "At times I felt my husband and I 
should use donor sperm as well," she 

confesses. "I wanted some even ground, 
for the baby to be genetically related to 
neither of us." She also worries about 
the future, when her "already bull 
headed" daughter confronts her. "I 
imagine we'll ha\'e fights, and she'll say, 
'You're not my real mother.'" 

Despite the "grueling process" and 
concerns that she was "tempting God," 
or endangering her own or her baby's 
health by taking fertility drugs, Diane 
says she would do it again. "It was a jour- 
ney of learning to count your blessings 
and deal with disappointment," she says. 
"During the process 1 had a iniscarriage, 
mood swings, and a terrible allergic 
reaction to a progesterone shot. I want 
ed someone to tell me it was o\'er — that 
it was time to mo\'c on. But it's really a 
miracle. A baby is such a jo)' and a gift." 

Fertility Forecasting 

Yet what if scientists could help infer- 
tile women, especially older women, 
avoid the issue of donor eggs in the first 
place? "We're trying to understand 
what makes the best quality egg, 
because the more we know, the more 
we may be able to treat the eggs of older 
women, to make them act hke young 
eggs," Powers says. "If a woman goes 
through I\'F and we get 15 eggs, are 
some more hkely than others to make 
an embryo? We'd hke to know more 
about egg physiology and function so 
we can improve culture conditions. 

"In New England," he adds, "we don't 
experiment on eggs or embryos that are 
going to be discarded; we take pictures 
of a h\ing embryo with a microscope 
and quantify the images v\1th comput- 
ers to learn about the embryo's func- 
tion without harming it." Pow'ers adds 
that patients decide what to do with 
their unused embryos. 

.Another option on the horizon, notes 
Schultz, is freezing o\'arian tissue or 
eggs. "The technology has been created, 
but has not been consistently success- 

ful," she says. "Women who are worried 
about their future fertihty could freeze 
their eggs or part of an ovary. But it is 
unclear what the ramifications are for 
the children and the safety of the preg- 
nancy when women conceive after nor- 
mal ctuldbearing years. This is truly 
experimental in many ways." 

StUl another — though contro\'crsial 
and experimental — treatment to help 
older women involves transferring 
genetic material from one of their own 
eggs to the egg of a younger woman, 
after the DNA has been remo\'ed from 
the target egg. But the technique, some 
rimes called "nuclear transfer," "belongs 
in the experimental lab, with animal 
models," Powers says. "It's unethical to 
suggest otherwise. This is a treatment 
for an older woman with older eggs, 
but we don't know what the problem is 
with older eggs." 

Ryan explains: "The question is, is 
it the cytoplasm or the nucleus that's 
at fault? It seems to me that both are 
in question." 

Treating Male Infertility 

LnfertiUty doesn't just affect women. 
Men account for 40 percent of inferrih- 
t)' among couples, and the technology 
available to help them, too, has expand- 
ed in the last decade, bringing with it 
new questions. 

A variety of sperm problems can 
account for male infertility. Sperm may 
be completely absent in the ejaculate, 
present in low concentrations, have 
poor motiht)', or have an increased per- 
centage of abnormal shapes and forms. 
The procedure most commonly used to 
o\ercome male infertiUty problems is 
intracytoplasmic sperm injection 
(ICSI), which allows an embryologist 
to inject a single sperm directly into the 
cytoplasm of a mature egg using a 
microinjector pipette. ICSI can facili 
tate fertilization with sperm that will 
not bind to or penetrate an egg, and it 

'Names with an asterisk have been changed. 



can be used in men with extremely low- 
numbers of sperm. 

"ICSI was a major breakthrough 
about seven years ago," Powers says. "If 
you just put one moving sperm and one 
egg in a dish, the odds are low of them 
coming together. Normally we mix 
100,000 sperm for each egg, so ICSI helps 
us treat the case of a man who doesn't 
have 100,000 moving sperm." 

Other procedures may need to be 
used in conjunction with ICSI, such as 
microsurgical epididymal sperm aspira 
tion (MESA). First performed in 1985, 
MESA is a microsurgical procedure car- 
ried out in patients whose sperm can 
not be obtained through ejaculation, 
explains Robert Oates, a urologist at 
Harvard Vanguard Medical Associates 
and Boston Medical Center. "These 
patients include those with congenital, 
unreconstructable blockages of their 
ductal system, or deficiencies in their 
sperm transport system," he says. "The 
basic concept is to extract sperm from 
portions of the epididymis that will 

then be used in conjunction with 
advanced reproductive techniques in an 
attempt to achieve pregnancy" 

But for men with non obstructi\'e 
azoospermia, Oates points out, "sperm 
production is so poor that no sperm can 
be found in the ejaculate." For approxi- 
mately half of these men, indi\'idual 
spermatozoa may be found in the testic- 
ular tissue itself, a harvesting procedure 
knov^ii as testicular sperm extraction 
(TESE). TESE is then used in conjunc 
tion wdth ICSI to achieve pregnancy. 

But What's Being Passed On? 

"Our technology has surpassed our 
understanding of what causes these 
sperm-deficiency conditions," Oates 
says. He points out that many genet- 
ically based syndromes result in 
reproductive dysfunction in men, 
and notes that when TESE and ICSI 
are used to achieve pregnancy, the 
result can be males with the same 
genetic abnormality. 

Kallmann's syndrome, a condition of 
azoospermia occasionally due to a 
defect in a gene on the X chromosome 
that also affects olfactory nerves, is one 
example. "If we help a man with Kail 
manris syndrome achie\'e a pregnancy 
with his wife, some of the conse- 
quences may be seen in his grandsons," 
Oates says. "We explain that his grand 
son through his daughter may be affect 
ed, and then it's a personal decision." 

Infertility is a condition, he adds, 
"but there are many other diseases that 
people knowingly pass on, like Hunt 
ington's disease or sickle cell anemia or 
albinism, so we should not have a leg 
islati\'e mandate that this person can 
not reproduce. Talk about a slippery 
slope. What about the man who's 4 2 
or has bad eyesight? 

"How are we supposed to define the 
perfect human?" Oates adds, noting 
that as preimplantation genetics 
enables indi\'iduals to screen for more 
characteristics, as opposed to devastat 
ing diseases, there's potential for abuse. 



For everyone involved in the business of making babies, 
both the challenges and the rewards are plentiful. 

"Think of depressive illness, which 
many talented artists have had. What a 
shame if we didn't transfer an embryo 
destined to be Hemingway because we 
knew it had manic depressive disorder. 

"What makes treatmg infertilit)' dif 
ferent from treating other diseases is that 
it affects the next generations," he says, 
noting that "it's crucial to counsel 
patients on what is known and unkno\\'n 
about their situation before they decide 
to proceed with ICSI." He adds that tests 
are being cle\'eloped to test sperm, rather 
than blood, for genetic mutations. 

In the meantime, Oates says that his 
position should be "to do as much as I 
can for the patients. Only they can 
understand what this means for them." 
He does draw a line, howe\'er, at some 
procedures. "I don't agree with cloning 
at all," he says. "A cloned child wouldn't 
ha\'e his or her own genetic identity." 

R\'an agrees, saying, "A child ought 
to be sought for his or her ou'n sake." 

Oates also balks at retrie\ing sperm 
posthumously, noting that he received a 
call last winter from a woman with that 
request. "I explained that 1 wouldn't 
perform the procedure because I didn't 
know whether that had been the man's 
desire," he says. "You can't take his 
organs without consent — I don't think 
you should be able to take his tissues 
either. What if it were a woman in a 
coma? Would we give her medication 
to make eggs and then harvest them?" 

Turning to Sperm Donors 

Even artificial insemination, a repro- 
ductive option that has long been used 
to help heterosexual couples, has led to 
a different set of concerns for both 
patients and clinicians in recent years. 
KeUy* and Judy,* a lesbian couple in 
their thirties, decided to use a sperm 
bank because they knew that adoption 
would not be an easy route for them. 
Kelly eventually got pregnant using 
anon)Tnous donor sperm and intrauter- 

ine insemination and ga\'e birth to a 
healthy boy. Still, she felt guilty about 
ha\'ing a son with no father in the pic 
ture. "We know men who will act as 
role models," she says, "but I worried 
about depri\ing him of the chance to see 
Ms own identity reflected in his father." 

At first, Kelly says, they spent hours 
poring over sperm donors' essays. "We 
first screened for medical problems," 
she says. "Then we tried to screen for 
character and motive. If he saw a sister 
suffer through fertility problems, that 
was more appealing than someone who 
just wanted a new stereo. But then we 
got more cavalier— anyone tall with 
light colored eyes was great. Not that 
w'c would be fooling anybody, but we 
wanted to combine our physical traits." 

Kelly points out that the process was 
far from easy. "Arduous is a fair descrip- 
tion," she says. "It was extraordinarily 
stressful and expensive. But when we 
look at our son, all our worries dissolve. 
He's so beautiful and so well-lo\'cd." 

Ungerleider-Springer met with 
another lesbian couple whose request 
was more complicated. "Neither woman 
had a history of infertility," she says. 
"They both wanted to get pregnant, but 
instead of just using donor sperm, each 
wanted to go through an IVF cycle, fer- 
tilirc her eggs with donor sperm, and 
transfer the embryo to the other 
woman. Should you do that for psycho 
logical reasons when there's no medical 
indication?" After her team members 
discussed the risk factors — including a 
slightly higher incidence of premature 
delivery with I\'F — and after they 
considered the appropriate use of 
resources, they decided not to grant the 
couple's request. 

Whether it is the clinician or the 
patient who must make the decision to 
end infertility treatment, Steinberg 
says, mental health specialists can be 
helpful. "Patients need to grieve the fact 
that they may not have a genetically 
related child," she explains. "We need 

to help them understand that they've 
gi\'en the technology a fair chance." 

The Core Questions 

.Although people undergoing infertility 
treatment and any resulting offspring 
are most affected by the issues raised by 
ART, society's values become part of the 
broader ethical discussion. 

Most infertility programs work w ith 
an advisory board charged with 
reviewing the procedures that might 
raise ethical questions. At Brigham and 
Women's Hospital, Barbieri says, "the 
doctors' mandate is to care for patients, 
but also to be aware that society is 
monitoring our medical practice. I view 
our ethics committee — which includes 
three clinicians, an ethicist, a judge, a 
law school professor, a hospital attor 
ney, a chaplain, and a social worker — as 
collectively representing the diverse 
\iews of society." 

Ryan points out that the core of ethical 
problems for reproductive biology "goes 
back to the tension about abortion and 
the rights of women versus the interests 
of society. After that, the largest issues 
associated with reproductive technology 
are typified by IVF, and the recurring 
argument from the Catholic Church that 
any assisted reproduction is iUicit. Hav- 
ing said that, the questions are whether 
it's safe, then what impact it will have on 
the child, and then what impact it will 
have on the family and society." 

For e\'eryone invoh'ed in the busi 
ness of making babies, both the chal- 
lenges and the rewards are plentiful. 

"You get a great reverence for human 
life when you work with embryos in 
the laboratory," Powers says. "It's an 
honor and a responsibility to hold a 
human embryo in a pipette, especially 
when that embryo walks in the door as 
a two-year-old child to say hello." ■ 

Phyllis L Fagcll is associate editor of the 
Harvard Medical Alumni Bulletin. 



Ethical quandaries can leave the best-trained physicians struggling for answers 



dead, why did she call 911?" 

One member of the hospital's ethics 
committee tried to explain the situation 
to another: "She hadn't planned to call for 
help, but the blood oozing from the knife 
wound in his neck was too unsettling. 
She panicked. When the ambulance 
arrived, she knew she'd made a mistake." 

"Was she the appropriate surrogate 
decision maker?" 

"Absolutely. He was obtunded, and she 
was both his next of kin and his legally 
designated health care agent. In fact, as 
she blocked the gurney, she waved his 
proxy document so there would be no 
doubt as to who was calling the shots." 

"She blocked the gurney?" 

"Yes — he was all ready to go into the 
operating room when she said, "i'ou're not 
taking him to surgery.'" 

"What did the surgeon do?" 

"He was \-ery upset. He had a patient 
with a hole in his left carotid artery who 

needed immediate surgery, and the man's 
wife, who had the legal power to make 
decisions, was yelling, 'If you touch my 
husband, I'U have you arrested for assault 
and battery!'" 

"Either the woman was crazy, or e\il, or 
there's more to the story." 

There often is more to such stories. In 
this case — ^which happened several years 
ago and led the surgeon to seek help from 
the hospital's ethics committee — the 
maris children told the social worker that 
their parents had been de\'0ted to each 
other for 42 years. Their mother's obstruc- 
tionism was, in fact, rooted in a deep con- 
cern for her husband's welfare. 

For 15 years, the man had suffered 
from sc\ere depression. He had tried 
antidepressants and electroshock thera 
py, yet nothing had worked. He told his 
family he didn't want to continue li\ing 
in what was, for him, a state worse than 
death. When he plunged the knife into 
his neck, his wife and children, who had 

by David Steinberg 





I was deeply conflicted, because I wanted to respect my patient s 
should die from an unanticipated, easily correctable problem 

watched his prolonged agony, hoped he 
would find peace at last. 

The emergency room doctors ques 
tioned whether a morbidly depressed 
man was capable of meaningful decision- 
making. They knew that, in emergencies, 
it's often best to take all possible mea- 
sures to preserve life. Death is a choice 
that cannot be rex'ersed. 

In this case, the dilemma was resolved 
before the ethics committee could 
respond. In the midst of the emergency 
room tumult, the flimsy clot that had 
sealed the hole in the man's carotid 
artery Mted off. The fatal hemorrhagic that ensued was indifferent to the 
surgeon's unresoK'cd ethical dilemma. 

Ethics has become an inescapable and 
vital part of clinical practice. During my 
early years as a hematologist, I focused 
on learning medicine. Yet many of the 
decisions I had to make — how much to 
tell patients when their prognosis was 
dismal, when to withdraw life sup- 
ports — were not simply technical, med- 
ical judgments; they also often required 
the negotiation of conflicting x-alues. 

Ethical dilemmas have become so 
integral to the practice of medicine, in 
fact, that the Joint Commission on 
Accreditation of Health Care Organiza- 
tions now requires health care facihties 
seeking its imprimatur to ha\'e a mech- 
anism for dealing with ethical conflict. 
As a result, many hospitals have ethics 
consultants or committees. 

And Baby Makes Six 

Many ethical concerns arise because 
technical advances become available 
before we can fully understand their 
implications. The ability to culture 
human embryonic stem cells, for exam- 
ple, holds great promise, yet has creat- 
ed controversy about the moral status 
of those cells. And assisted reproduc 
tive technologies, v\hich, when called 
on for a dramatic performance, can 
gather five people together for the 
enterprise of making a baby, have 

turned a seemingly simple question — 
who should be considered a baby's par 
ents — into a matter of contention. 

]n California, Luanne and John Buz 
zanca used donated sperm, a donated 
egg, and a gestational surrogate mother 
to make a baby. Before the baby was 
born, the couple separated and John 
Buzzanca, to a\'oid pa)1ng child support, 
argued that he should not be considered 
the father. The court decided that 
although Buzzanca was not the genetic 
father, he was instrumental in arranging 
the baby's conception and birth, and 
ordered that he pa\' child support. 

Colliding Principles 

Sometimes two vaUd principles collide 
under circumstances that make it 
impossible to honor one without vio 
lating the other. The clash bet\\'een 
respect for patient autonomy and the 
principle of beneficence, for example, 
has caused me significant angst o\'er 
the years. A troubling incident invoh- 
ing a patient I'll call George Warner 
illustrates this conundrum. 

Warner, a 74-year old retired 
plumber, had .slow'ly progressix'e, incur 
able cancer. In the context of a discussion 
about his disease, he had mentioned that 
he would not want to be placed on a res- 
pirator. Despite his cancer, he felt reason 
ably well until he was admitted to the 
hospital with pneumonia. A few hours 
later, he suddenly became extremely 
short of breath, and his blood pressure 
fell precipitously. A chest x-ray revealed a 
collapsed right lung, probably caused by 
a mucous plug. We could easily resolve 
the problem b\' suctioning the mucous 
through a bronchoscope. To do this safe 
ly, however, would require Warner to be 
on a respirator for se\'eral days. 

I was deeply conflicted, because I 
wanted to respect m)' patient's wish not 
to be placed on a respirator, but I didn't 
think he should die from an unanticipat- 
ed, easily correctable problem when he 
had minimal cancer and a good qualit)' 

of life. I could not respect my patient's 
choice and, at the same time, act in what 
I behe\'cd to be his best interest. 

I discussed my anguish with Warn- 
er's wife, who agreed to the bron- 
choscopy and the respirator. I suffered a 
few sleepless nights; fortunately, when 
Warner recovered from this episode, he 
told me that he agreed with my decision. 
But this story could easily ha\e had an 
unhappy ending, fiQed with recrimina- 
tion and guilt. 

Shades of Gray 

Other chnical dilemmas stem from inher- 
ent conflicts, such as the one between a 
pregnant woman and her letus. Innova- 
tive surger)' that may benefit the fetus, for 
example, compels us to define an accept- 
able le\'el of risk to the mother. .And, in a 
contro\er,sial decision, a South Carolina 
court, forced to balance fetal and mater- 
nal rights, used the state's child abuse 
laws to sentence a woman to eight years 
in prison because she had placed her fetus 
at risk by using cocaine while pregnant. 

The probabihstic nature of medicine 
also generates ethical conflicts o\-er the 
withholding and withdrawing of thera- 
py. These are not merely theoretical 
questions for me, because I work with 
\'ery sick parients. When they are in cri- 
sis, it is often impossible to predict 
whether their future holds reco\-ery and 
a period of good living, or a fruitless 
struggle and inevitable death. 

I would not treat a patient if I knew 
the chance of success was zero; the con- 
verse would hold true if the chance of 
success was 100 percent. In the clinical 
arena, the odds often lie between those 
numbers and arc tinged with uncerttunt)' 
Does a 20 percent Kkehhood of success 
warrant vigorous therapeutic inten'en- 
tion? What about 8 percent? Where do 
wc draw the line, and vvh\'? These ques- 
tions have no generally accepted answers, 
and physicians and families are often left 
to agonize over therapeutic decisions that 
present as ethical dilemmas. 



wish not to be placed on a respirator, but I didn't think he 
when he had minimal cancer and a good quality of life. 

Another area of conflict lies in the 
paucit)' of resources, which forces us to 
consider how to fairly dispense scarce 
organs, intensive care unit beds, and 
other limited health care resources. 
Congress has debated how best to dis 
tribute donor hearts and livers to 
patients at risk of dying while Ian 
guishing on a waiting list. 

The lack of consensus on such basic 
issues as when life begins and ends ere 
ates another wellspring of ethical con- 
fhct. The abortion debate, for example, 
continues without resolution. .And some 
in.stitutions ha\'e modified the definition 
of death and har\-ested organs after a 
patient's heart has stopped beating for 
two minutes because, at that point, 
reco\'er\- is highl}- improbable and organs 
are still sal\'ageablc. Critics argue, how- 
ever, that this approach \'iolates the 
"dead donor rule," because at two min- 
utes the \\hole brain, and therefore the 
patient, may not be dead. 

A Multidisciplinary Approach 

Bioethical dilemmas generate cries for 
help, because they are urgent and resis- 
tant to resolution, .\lthough many peo- 
ple still turn to rehgion for answers, in 
recent decades, there has been a moral 
shift toward the philosophic tradition of 
secular ethics. Priests, ministers, and 
rabbis ha\'e been joined b)' a relati\'ely 
new professional, the bioethicist. The 
voices of these bioethicists are heard in 
the media, in scholarly and public pohcy 
forums, and in the more intimate world 
of chnical medicine. 

The best descripti\'e term for bioethi- 
cists is "multidisciplinary." An expertise 
in medical ethics requires neither a spe- 
cific academic degree nor formal creden- 
tialing. Physicians, nurses, theologians, 
lawyers, social workers, philosophers, 
sociologists, and other thoughtful pro- 
fessionals ha\'e all entered the arena. 
Their legitimacy rests on the multidi- 
mensional nature of ethical problems, 
which demands analysis from a \-ariet\' of 

perspectives. Lawyers contribute the 
legal perspecti\'e, theologians the doctri- 
nal and spiritual, social workers the 
cross-cultural, and philosophers the ana 
Klical and theoretical. My primary con- 
tribution would be a perspecti\'e rooted 
in years of clinical experience. 

In the hectic world of medicine, ethi 
cists pro\ide clinicians with the oppor 
tunit)' to discuss problems and to share 
the stres,scs that come v\'ith caring for the 
sick. Ethicists' more formal contribu- 
tions can be di\ided into three compo- 
nents: empirical, anal)tical, and moral. 

In their empirical mode, ethicists pro 
\idc rele\ant facts. What is the hospi- 
tal's pohcy on remo\'ing respirators? 
What is the risk to people who want to 
donate a lobe of their U\'er? How accu- 
rate is genetic testing for breast cancer? 
Ethical dilemmas are unlikely to find a 
sound resolution without a full under- 
standing of the rele\'ant facts; we are 
indebted to ethicists when they make 
that information a\'ailable. 

Many ethical dilemmas are more com 
plex than they first appear. Careful 
analysis can re\'eal the intricate dimen- 
sions of a problem and define the princi 
pies and \alues at stake. In analyzing 
whether a request to retrieve sperm from 
a dead man for posthumous procreation 
should be granted, for example, an ethi- 
cist might weigh the rights of the dead, 
the demands of infonned consent, the 
meaning of genetic identity, the interests 
of the unborn child, the emotional and 
property interests of the deceased's fam- 
ily, and any rele\'ant laws. Ethical analysis 
may be the most important contribution 
of bioethicists, whose expertise has been 
said to rest not on the positions they 
adopt, but on their ability to pro\ide a 
justification for those positions. 

Bioethics becomes most problematic 
in its moral mode, in which relative \'al 
ues are weighed to reach the answer we 
want — what's right and what's wrong. 
An ethicist's conclusions are ultimately 
contingent on the moral theory from 
which they are derived. Unfortunately, 

there is no consensus on a uniform 
moral theory. 

Some ethicists, for example, are utili 
tarians who define the right course of 
action as being the one that brings the 
most good to the most people. In Ore- 
gon, a list of medical procedures is 
ranked in order of their perceived bene- 
fits. Depending on the available budget, 
a line is drawn and Medicaid patients 
are not co\'ered for conditions below 
that hne. This approach is justified on 
utihtarian grounds, because it brings the 
most good to the most people. 

Other ethicists find moral bedrock in 
i\ristotehan \irtues such as trustfulness, 
prudence, and fortitude. One popular 
approach to ethics is rooted in respect for 
four nearly in\iolable principles: respect 
for personal autonomy' (inform and per- 
mit the patient to make unmanipulated 
decisions); non-maleficence (do no harm); 
beneficence (do good); and justice (dis- 
tribute limited resources fairly). 

Many of these and other secular 
approaches to morahty can be combined 
to varying degrees. Add cultural and reli- 
gious coloration, and \'ariet\' in the ethi- 
cal repertoire expands further. Bioethi- 
cists with respectable credentials can be 
found taking opposing positions on most 
moral issues, suggesting that bioethicists 
cannot distinguish right from wTong any 
better than the rest of us. 

What does this mean when we 
encounter ethicists in clinical settings? 
We can learn from their empirical and 
analytical contributions, and we should 
listen to their conclusions. When 
ethical issues arise, though, we must rec- 
ognize their confhcting methods and 
conclusions — and their faUibihty. Ulti 
mately, each of us must seek the answers 
to troubhng questions in the depths of 
our own moral consciousness. ■ 

David Steinberg '64 is chief of the Depart- 
ments of Hematology and Medical Ethics at 
the Lahey Clinic m Burlington. Massachusetts 
and editor of the Lahey Clinic Medical 
Ethics Newsletter. 



kAcr\\r A 


When limited health care resources 

must be divided, patients often reveal 

their sense of fairness 

three-month sabbatical to study the ethics of resource 
allocation in the National Health Service, the issues I 
was investigating hit the front page. The morning newspa- 
per headline read, "Leukemia Girl Loses Court Fight." 

Five years earlier, Jaymee Bowen, known at the time as 
"Child B," had developed non-Hodgkin's lymphoma at age six, 
hi December 1993, Jaymee was found to have acute myeloid 
leukemia, for which she received a bone marrow transplant in 
March 1994. The leukeinia recurred the following January. 

On clinical grounds, Jaymee's doctors recommended against 
more chemotherapy and a second bone marrow transplant, 
believing that the likelihood of response was extremely small. 
Jaymee's father, howe\'er, found speciahsts who were more opti- 
inistic about the potentiiU of further treatment, and he appealed 
to the Cambridge Health Authority — the British equi\alent of 
the insurer — to cover the treatment. When the Health Author- 
ity refused to pay for the ^75,000 regimen, citing the need to set 
priorities within its Umited resources, Jaymee's father sued. 

by James E. Sarin 






i f 


By recognizing about our patients what we know about 
simply atoms of individual need and desire- 

-we can 

Jaymee's heartwrenching situation 
provides an opportunity to contrast the 
ways in which the United Kingdom and 
the United States handle tragic choice 
situations. With the exception of the 
process leading up to the Oregon 
Health Plan in 1989, there has been httle 
in-depth public dialogue about the 
ethics of resource allocation in the Unit- 
ed States. Our main forums ha\'e been 
cinema, television, and sensationaUstic 
journalism. Movies such as The Rainmak- 
cr and As Good as If Gets portray the ethi 
cal issues as a Manichean struggle 
between needy patients and criminal 
insurers. Although medical journals 
have published cost effectiveness analy- 
ses that illuminate the complexities of 
the situation, these articles are read 
more attentivel)' by policy wonks than 
by poUtical leaders or the public. 

In contrast, the court process in Lon- 
don was impressi\'ely forthright. The 
first level judge ordered the Cambridge 
Health Authorit)' to reconsider, saying 
that "where the question is XA'hether the 
life of a ten-year-old girl might be sa\'ed, 
by howe\'er slim a chance, the responsi- 
ble authorit}' must in my judgment do 
more than toll the beU of tight resources." 

The Court of Appeals, however, 
reversed the lower court, writing that 
"in a perfect world am' treatment which 
a patient, or a patient's family, sought 
would be proNlded if doctors were will- 
ing to gi\'e it, no matter how much it 
cost, particularly when a Life was poten 
tially at stake. It would, howe\'er, be 
shutting one's eyes to the real world if 
the court were to proceed on the basis 
that we do li\'e in such a world. Difficult 
and agonising decisions have to be 
made as to how a limited budget is best 
allocated to the maximum ad\'antage of 
the maximum number of patients." 

Jaymee's dilemma disappeared from 
public \-iew two days after the heacUine 
appeared, when an anonymous donor 
provided £75,000 to pay for chemother 
apy and a donor lymphocyte infusion. 

The treatment provided a brief remis- 
sion, but the leukemia recurred and 
Jaymee died in May 1996. Since her 
death, however, the issues her treat- 
ment raised have received thoughtful 
attention in the United Kingdom. 


spends more than twice 
as much per capita on 
health care than the Unit- 
ed Kingdom, we rarely 

H ^V encounter resource dlo 

mmML^mi^^ catlon Is.sucs in as raw a 
form as Jaymee and the Cambridge 
Health Authority did. Despite our 
wealth, however, the expansion of 
promising new treatments, combined 
with aging populations, makes h\ing 
within a budget a difficult but una\'oid- 
able challenge. Good prex'entive medi- 
cine, broader use of well- conceived 
guidelines, and aggressi\'e improvement 
of health care quality will allow us to 
get more mileage from our health care 
expenditures. But the tension between 
individual desires and community 
resources is a fact of social existence. 

Unfortunately, for at least 20 years 
our health care strategy has tried to 
a\'oid this inescapable tension. We have 
asked the market to allocate resources 
without acknowledging that limits 
must be set. As a result, we have not 
been able to engage in meaningful 
political deliberation about how to 
allocate resources in the most ethical 
manner. Until we find a constructive 
way to discuss how to do our best 
within reasonable limits, public dis 
trust of the health care .system will con- 
tinue to escalate. We physicians and 
medical educators can play a crucial 
role in helping society make hard 
choices in a responsible, compassionate 
manner. Although we cannot fully 
compensate for the lack of political 
leadership on these issues, we can make 
a difference, much as we have done 
with end-oflife care. 

When I attended HMS, I was taught 
that revealing the truth about terminal 
illness was cruel, destroyed hope, and 
showed poor medical judgment. Med- 
ical students today are taught the 
opposite — that tr)ing to help patients 
understand and deal with the painful 
realities of terminal illness is .sound 
practice. We are doing a better job of 
helping students talk with patients 
and families in an empathic, trust- 
building manner, and we are doing so in 
our own practices. If we have learned to 
help ourselves, our patients, and the 
public deal better with mortalit) — the 
ultimate form of limit — we must be 
capable of doing the same in creating 
guidelines for health care expenditures. 
But how can we do this? 

Our patients will probably be our 
best teachers. Conversations with 
patients and famihes that are ultimately 
about resource allocation issues have 
been among my most humanly rich and 
surprising encounters. These exchanges 
ha\-e cominced me that the dominant 
ethical paradigm we assert for our pro- 
fession inaccurately portrays our 
patients as islands of pure narcissism 
and pays too little attention to human 

The biggest impediment to helping 
our patients deal with resource limits is 
the belief that ethical physicians should 
think onl)- about the welfare of indi\id- 
ual patients. We belie\'e that in our 
clinical role we should consider bene- 
fits and harms to indi\idual patients 
and not costs to society. If we do other- 
wise, we will become unethical double 
agents, and our patients will not — and 
should not — trust us. Experience leads 
me to question this \iew. 

Six years ago my mental health col- 
leagues in what was then called Harvard 
Communit)' Health Plan concluded — 
with the help of our members — that we 
needed to offer more outpatient care to 
our sickest patients. .Although we were 
not given additional money, we were 


ourselves — that we are attached to others and not 
inch toward a broadened medical ethic. 

dlowcd to set new priorities. We con- 
cluded that we could increase services 
to the sickest patients only by requiring 
a new pa)Tnent from the less sick after 
their eighth outpatient appointment. 

.•\fter we made this change, my col- 
leagues and I talked with our patients 
about the new policy. With patients 
who were eligible for more services, 
such as those with schizophrenia, we 
said, "The bad news, as )'ou know, is that 
you suffer from a se\'ere illness. The good 

rupt an appointment with one patient 
to attend to an emergency with another. 

No one was happy about paying the 
new fee. But no one thought the policy 
was unfair. Our patients understood 
that we could not cov'er e\'ery beneficial 
service. Gi\'ing priority to the sicker 
members seemed sensible and fair. 

Of course patients can trust us only U 
they helie\'e that we are passionately 
committed to their welfare. But I ha\'e 
been impressed with how often my 

news is that we now ha\e more outpa 
tient treatment resources awailable." 
With our healthier patients, we had the 
opposite conversation; "The good news 
is that e\'en though you have some sig- 
nificant problems, you do not have a 
severe illness. The bad news is that after 
eight sessions there is now a new fee." 

We did not present cost- effective- 
ness analyses or complex ethical argu- 
ments about resource allocation. We 
used simple, commonsense terms that 
made fundamental human sense. To 
most members, the policy had the same 
kind of obvious logic as when we inter- 

patients ask me to consider the welfare 
of others — usually the welfare of family 
members and friends, but often that of 
the wider community. They say things 
like: "1 don't w^ant to take away from 
what my children have in the future"; "I 
want to take part in a study so I can 
contribute to others"; and "I am sure 
there are other patients whose need is 
greater than mine." 

By recognizing about our patients 
what we know about ourselves — that 
we are attached to others and not sim- 
ply atoms of individual need and 
desire — we can inch toward a broad 

ened medical ethic. The as,scrtion that 
patients will trust us only if we focus 
solely on what benefits them as individ- 
uals is a hypothesis, not a proven fact. It 
overlooks the degree to which our 
patients and the pubhc at large harbor 
concerns for others. 

Toward the end of his Hfe, my father, 
twice a widower, married again. Shortly 
after the wedding, my new stepmother, 
whom he had known for only a few 
months, began to show signs of demen- 
tia. My father had macular degeneration, 
and caring for a spouse with dementia 
was extreme!)' difficult. I was concerned 
about him, and I gently asked if he felt he 
had to take care of someone he had not 
known long. His answer was reproach- 
ful but instructive; "How many ways can 
a blind 87-year-old be u.seful in this 
world? Of course I will take care of her!" 

For more than 70 years, Francis Weld 
Peabody's eloquent lecture on "The 
Care of the Patient" has provided HMS 
graduates with an ethical compass. I 
doubt that I am alone in feeling that I 
could quote the linal 14 words of 
Peabody's beautiful talk — "the secret of 
the care of the patient is in caring for the 
patient" — more easily than I could 
answer board questions in my specialty. 

But the key ethical guidance for the 
next decade is actually buried in the first 
12 words of that famous sentence — 
"One of the essential qualities of the cUn- 
ician is interest in humanity." We need 
to help patients, farruhes, and the public 
develop an ethic that cares about both 
the individuiil and the wider communi- 
ty. That caring is what ethical resource 
allocation is all about. Properly under- 
stood, Peabody teaches us that ethical 
physicians must embrace responsibiUty 
for the common good as well as the wel- 
fare of individual patients. ■ 

]amcs E. Sabin '64 is associate dinkal professor 
of psychiatrx at HM.S and co director of the 
Center for Ethics in Managed Care at Harvard 
Pilgrim Health Care and HMS. 




Now that the doctor most associated with physician-assisted suicide is in prison 

JUST ovTR A YEAR AGO, JACK KEN'ORKLAN when Ke\'orkian was sent to prison 

stared dowTi millions from the tele\i- on murder charges, 
sion screen. Mewers watched him Whether one agrees or disagrees 

smile and banter with Mike Wallace, with Ke\orkiaris actions, the highly 

then, in a \ideotaped replay, adminis' charged debate has helped us reflect 

ter a lethal injection to Thomas Youk, on the \'alues, hopes, and anxieties 

a Detroit man suffering from amyo- that we as physicians and as patients 

trophic lateral sclerosis. Fi\'e months share about dying. We wish, in the 

later, the contro^'ersy triggered b\' the final days of our hves, to be free of 

tele\ised spectacle of Youk's death suffering, to maintain control, and to 

sparked yet more national discussion surround ourselves with a commu 





:an the debate continue in a more reasoned way? • by JOSHUA HaUSER 

nity of family and friends. With 
Kevorkian's comiction, we can shift 
the focus from critiquing his actions 
to ensuring that we help our dying 
patients and their families achieve 
those desires. 

Many physicians, nurses, chap- 
lains, social workers, and, most of all, 
patients and famihes, ha\'e thought 
deeply about endof-Ufe issues. Many 
of these same people were appalled 

by what the\' percei\'ed to be the Souk's s)Tnptoms (such as medica- 

indignities in Kevorkian's string of tions to decrease secretions and 

more than 100 physician-assisted sui- relie\'e the sensation of choking), to 

cides and, in particular, in Thomas the absence of family members or any 

Youk's videotaped death. Members other health care professionals, 
of both the medical community and In the view of many health care 

the media ha\'e raised troubling ques- professionals, including myself, it is 

tions about Youk's death, from indeed both sad and counterpro- 

Kc\'orkiaris cursory nod to obtaining ducti\'e to the establishment of 

"consent," to his disregard of mea- sound guidelines for end-of-life 

sures that might ha\'e alle\iated 




care that the loudest voice in 






In the end, Kevorkian s story has emphasized that end-of-life care 
More broadly, it is about the life experiences of patients and their 

this debate has been the cold tone of 
Jack Kevorkian. We would argue that 
our emphasis should be on care and 
comiort, not on efficiency and ease. As 
physicians, we must focus not on the 
death itself, but on maintaining quali- 
ty of life during the hours, days, and 
months before someone dies. 

A discussion of three integral values — 
alleviating suffering, preserving autono- 
my, and maintaining community — repre- 
sents a more appropriate starting point 
than debates about the morality and 
legality of physician- assisted suicide. 
Realigning our focus on these values 
shifts our attention away from Ke\'orkian 
and more properly toward patients and 
their families. We need to reframe the 
debate by asking one basic question: 
What do patients and their families need 
and want in end-of-life situations? 

First, what do we mean by suffering? 
Physical, psychological, spiritual, and 
existential suffering take myriad forms, 
and we must strive to understand and 
alleviate them all. The experience of suf 
fering varies widely among patients and 
their families, and relie\ing it is more 
central to the role of physicians than 
either fighting or embracing death. To 
begin to understand each individual's 
experience requires more than medicine 
and much more than a lethal injection; it 
takes time, patience, and caring. 

Second, we must think deeply about 
the notion of autonomy How do we 
maintain control over our lives, and 
when do we cede this control? Patient 
autonomy, which is a crucial value 
throughout medicine, does not exist in a 
\'acuum. The influence of family mem 
bers, physicians, and others on patients' 
choices is profound and must be recog- 
nized and explored. Physician- assisted 
suicide raises many questions about 
how patients, families, and doctors com 
municate and act in end-of-hfe situa 
tions. Clearly, part of the desire for 
physician assisted suicide is the wish to 

preserve control, but the meaning of 
such control can be complex, and it 
therefore requires a more thoughtful and 
sophisticated examination than that 
which can be provided in a "60 Minutes" 
segment. Were there other ways, for 
example, besides allowing Ke\'orkian to 
gi\'e him a lethal injection, that Youk 
could have preser\'ed some control over 
his hfe and his body? 

Then we must think about communi- 
ty. How do we come together as patients, 
doctors, families, and members of vari- 
ous communities to care for each other 
and consider these issues? Some patients 
may want to die alone, while others may 
want to be with loved ones. Physicians 
should strive to understand these prefer- 
ences. We know, on the basis of the tele- 
\'ised videotape, that Youk died alone, a 
circumstance that raises questions 
about whether he wanted it that way. 
End-of-life care should take place in an 
emironment open enough to allow 
patients and their families to express 
and realize such choices. Physician - 
assisted suicide, as practiced by 
Ke\'orkian, makes this impossible. 

.Although Kcwirkiaris conviction has 
brought some closure to one part of this 
debate, these issues will not — and should 
not — disappear. The disagreement 
between the Michigan judge who sen- 
tenced Kevorkian and Youk's wife and 
brother adds a new wrinkle to this dis- 
cussion. Their words revealed the poten- 
tially conflicting roles of the law and fam 
ilies in end of life CLire, suggesting that 
the gulf between the law and families, 
whether perceived or red, is wide. 

hi addressing Kevorkian, Judge Jessi- 
ca Cooper wrote, "This trial was not 
about the pohtical or moral correctness 
of euthanasia. It was about you, sir. It 
was about lawlessness." Yet Youk's 
widow was quoted as saying that her 
husband "would be greatly distressed 
that the man who brought him peace at 
the end would now suffer on his 

Mike Wallace (left) and Jack Kevorkioi 

account." And Youk's brother added, 
"History will judge us harshly for such a 
lack of insight and compassion." 

Clearly, individual interpretations of 
the "moral correctness" ot Kevorkian's 
actions and individual views of compas- 
sion are central to the ongoing debate 
.unong physicians, patients, and families. 


is not — and must not be — only about physician-assisted suicide, 
families. And it is about suffering, autonomy, and community. 

in the lobby of a Michigan hotel >vhere Wallace interviewed the euthanasia advocate for the controversial "60 Minutes" broadcast. 

But the law cannot address all the deci 
sions patients and their famihes must 
make. Discussions among patients, their 
families, and their caregi\'ers will allow us 
to pursue a richer understanding of serious 
illness and compassionate end-of-life care. 
In the end, Kevorkian's story has 
emphasized that end of- life care is not — 

and must not be — only about physician 
assisted suicide. More broadly, it is about 
the life experiences of patients and their 
families. .And it is about suffering, auton- 
omy, and community. As physicians, we 
can hope that, in the new century, we 
will conduct a responsible discussion, 
away from the glow of tele\ision and the 

spectacle of Jack Ke\'orkian. These issues 
are too important to be ignored, and too 
profound to be debated according to an 
agenda set by any one indi\idual. ■ 

Joshua Hauscr '95 is a fellow in the Robert 
Wood Johnson Clinical Scholars Program at 
the Uniyersity of Chicago. 




Do patients have the right to decide when their time is up? 


As a doctor being asked to prescribe a 
terminal dose of medication, I thought 
my question seemed fair. I had, after 
all, an absolute responsibility to deter- 
mine mental competence, a motivation 
free from outside pressure, and the 
lack of an overriding, possibly tempo- 
rary or treatable psychiatric illness. 

Jim,* sitting across from me, was 
composed, intent, and dead serious. 
In his forties, he had labored after his 
brain biopsy to adjust to the diagnosis 
of a high-grade astrocytoma, a brain 

tumor whose typical prognosis is 
measured in months. After a round of 
consultations and second opinions 
and a review of the good, the bad, and 
the ridiculous on the Internet, he 
knew that a temporary remission 
after radiation therapy was possible. 
But, lacking divine intervention, his 
prognosis was still poor. 

"I don't want to live without con- 
trol of my body," he said. "I've been 
told that I'll have no pain, but I'll lose 
control of my body and mind, bit by 
bit, and I don't want to live like that." 

by Peter M. Patricelli 


'The names of patients have been changed. 



I sat in front of her and extended my hand, which she took with 
noooooo...noooooo...noooooo!" She put my hand to her cheek 

I assured him that if he didn't choose 
to end his Ufe, we could take measures 
to ensure that when he lost conscious- 
ness, he would linger only a few days 
more, without pain or awareness. 

He shook his head emphatically. 

"I don't want even a few days of a 
vegetable existence. And I don't want 
to see myself disintegrate." 

As Jim spoke, his mother sat beside 
him, dabbing at moist eyes, but solid 
and supportive. "I dorit want Jim to 
die, or leave one day sooner than nec- 
essary," she said. "I want him with me 
under any circumstances as long as 
possible. But if this is what he wants, 
then all I can do now is support him 
and see that his will is done." 

After I finished my evaluation, I 
explained to Jim that he still had much 
to go through. "I hope the radiation 
therapy will help, but there are many 
uncertainties," I said. "I think we should 
go through the whole process now, get 
all our ducks in order. The critical issue 
will be timing. You wouldn't want to do 
anything too quickly, while you still 
have meaningful life to live. The danger, 
though, would be in waiting too long 
and risking a sudden brain event that 
might cause you to lose the ability to 
carry this out." 

Flanked by his parents, Jim walked 
out with the ironic plan of pursuing 
the gritty details of both life-seeking 
and death-enabling treatments. Both 
would be near disasters. 

Where Is Thy Sting? 

Tn Oregon, where I practice 
family medicine, the Death 
with Dignity Act allows ter- 
minally ill Oregon residents 
to obtain prescriptions for 
self- administered, lethal med- 
. ._ __i^.^ ications. This act, which was 
implemented in 1997, states that end- 
ing one's life in accordance with the 
law does not constitute suicide. Yet the 

U.S. Congress is debating the "Pain 
Relief Promotion Act of 1999," which 
could affect Oregon's law, as it would 
make it illegal to use scheduled drugs 
to hasten a death. Anyone "intention- 
ally dispensing, distributing, or 
administering a controlled substance 
for the purpose of causing death or 
assisting another person in causing 
death" could be prosecuted and given a 
prison term of 20 years to life. 

For me, the galvanizing experience 
in thinking about terminal patients' 
rights came not long after I finished 
my medical training. A patient. 

Mabel, sat in front of me for the first 
time 25 years ago as an independent, 
intelligent, professional woman who 
knew what she wanted and was used 
to getting it. She had her end-of-life 
decision-making written out, signed, 
and even notarized. The first thing 
she said after greeting me was, "I want 
you to be aware of my strong \\ish 
that, should I ever reach a point in my 
life that I am confined to a nursing 
home, or lose my ability to care for 
myself or interact meaningfully with 
other people, I don't want my life 
prolonged under any circumstances." 


her left and held between us as she pleaded, "Noooooo... 
and again cried, ''Noooooo...noooooo...noooooo!" 

I listened carefully and told her that I 
understood and, within the limits of 
the law, would do my best to comply 
with her wishes. 

"I don't owe anything of ni)' life to 
anyone," she told me. "I ha\'e always 
been on my own, and my work has 
been my life. Now I'm retired. When 
I can no longer live my life to my sat- 
isfaction, then 1 don't want to exist 
any longer." 

It was easy to nod in agreement, 
with her sitting whole and healthy in 
front of me. Two months later, during 
a medical procedure to head off a 

threatened stroke, the stroke won, 
robbing her of speech and motor con 
trol of her right arm and leg. Without 
today's sophisticated diagnostic tools, 
it was impossible to predict how 
much recovery was possible, and it 
was then considered legally risky to 
withhold intravenous fluids. She had 
to be rc\'ived enough for us to disco\'er 

A month later, on my first visit to 
the nursing home, she was sitting in a 
wheelchair in a large room filled with 
residents and staff. She saw me from a 
distance as I entered the room. 

The scream stopped all noise and 
mo\'emcnt in the room. My eyes 
sought the source of the scream. I rec- 

how devastated her brain had been, ognized the twisted face and took 

Then she was sent to a nursing home, 
where her brain recovered from the fog 
of acute injury only for her to discover, 
to her horror, that her worst possible 
nightmare had come true. 

the full pierce of its 
gle second. 

"Noooooo!" Mabel repeated, bend- 
ing forward at the waist and pushing 
\aguely and ineffectually on one wheel 
with her only working hand in an 
attempt to get to me. "Noooooo!" 

Attendants and nurses supported 
her as I approached. She had and 
would forex'cr have only one word — 
"Noooooo!" — with which she could 
stab, dismiss, or plead, depending on 
her level of anger. 

I sat in front of her and extended 
my hand, which she took with her left 
and held between us as she pleaded, 
"Noooooo... noooooo... noooooo... 
noooooo!" She put my hand to her 
cheek and again cried, "Noooooo... 
noooooo.. .noooooo!" The nurses told 
me she had not meaningfully spoken 
until then 
sucked dry of all emotion. 

A month later, with fear and trepida- 
tion, I \'isitcd again, and the scene was 
repeated. In the ensuing months, the 
staff asked that I call before my visits so 
that they could isolate her from the 
other residents and, I suspect, prepare 
themseh'es for her outbursts. 

Over the next six years, Mabel took 
antidepressants and still pleaded her 
unmistakable case. She tried starving 
herself, but when she became too 
weak to resist, the staff would feed 
her. When she developed seizures, she 
tried refusing medication, only to 
bring on even stronger seizures, which 
required hospitalization and treat- 
ment. She tried, over and over, to end 

I left the nursing home 




Jim stares for a moment, then begins nodding. ''Sleep," he manages, 
cants them, lays his cheek on his hands in the universal sign of 


her life. And I tried, over and over, 
pushing hard within the hmits of the 
law, to let her life end. To no avail. 

Eventually I had to withdraw as her 
physician. I couldn't take the gut-rip 
ping experience of her pleading any 
more, because I agreed with her utter- 
ly and yet was powerless. She lived 
eight more years. And I was left won- 
dering what right societies and go\ - 
ernments have to make demands on 
people in end-of-life situations. 

Shuffling Off This Mortal Coil 

Jim's consultation to fulfill 
the requirements to get the 
end-of-life medication is a 
disaster. The specialist who 
had offered himself as the 
necessary second opinion 
tells Jim he can't possibly 
participate, because his 
practice and building are owned by 
Sacred Heart Hospital, and he hadn't 
realized he would have to sign any 
thing. According to Jim's parents, the 
specialist then dismissed the three of 
them with few words and fewer min 
utes. They are furious. 

Worse, I then receive a four-page 
"consultation" from the specialist in 
which he laboriously details a com 
plete examination and states that Jim 
is not terminal, may survive 18 months 
or more, and, with a response to some 
newer experimental drugs, possibly 
considerably longer than that. The 
report is in direct conflict with this 
same doctor's clinical notes before 
any mention of end-of-life medica 
tion, and it counters the prognosis of 
other specialists. The optimistic prog- 
nosis also is based on treatments that 
Jim and his family ha\'e already reject- 
ed as too toxic and too unlikely to 
result in a remission. 

My reluctant conclusion is that 
this doctor deliberately set out to 
sabotage the process. I call another 


specialist to confirm the original 
prognosis and to analyze the illogical 
optimism in this letter. 

I toss out the report, but the dam- 
age has been done. Time has been lost, 
and Jim's condition is worsening. The 
unnecessary pain and anger this 
episode has caused him and his family 
is incalculable. I must quickly find 
another doctor to serve as a consul- 
tant. The legal process before the med- 
ication can be dispensed is complex, 
precise, and — if not done right — pos- 
sibly unforgiving. Jim is about to start 
the radiation therapy, his only hope for 
even a minor remission. It also could 
backfire and hasten his end. 

Jim's radiation therapy does indeed 
backfire. The tumor swells in his 
skull, leaving little room for his brain. 
He is hospitalized, teetering on coma. 
Our hope is that, with treatment, his 
condition is only temporary and can 
be reversed. 

We still do not have a signed consul- 
tation. My second choice of doctor is 
deemed risky, because his professional 
connection to me is too Jim's par- 
ents are panicked. Unless he recovers 
enough to allow a complete mental 
evaluation by a doctor new to the case, 
there seems to be no hope of getting 
the necessary second consultation. 

Jim recovers enough to be dis- 
charged from the hospital to his par- 
ents' home and care, but then he 
begins to deteriorate again. In the 
first single stroke of good luck in six 
months, another specialist familiar 
with the case steps forward and says 
that he is willing to sign a form veri- 
fying Jim's prognosis and menta 
competency when he requested end 
of-life medication several months 
back. Would that be .sufficient? My 
contacts and legal con.sultations indi 
cate that it will. 

When the consultation form is 
received, only one step remains, 
must determine that Jim is still men 

tally competent, that when he drinks 
the medication, he understands the 
consequences. Actually, the doctors 
who drafted the Oregon legislation 
had a difference of opinion on this 
point, but my own personal ethics 
and a bit of legal paranoia make me 
decide to ask Jim's parents to bring 
him to the office for a final evaluation. 
They say they will be there in an hour. 

Helped in by his parents, Jim stares 
with a blank expression. Much has 
happened medically over the past two 
weeks, but the details are irrelevant. 
He has reached the point at which fur- 
ther treatment for any purpose other 
than to relieve pain or suffering is at 
best useless, unwarranted meddling 
that could serve just to prolong a situ- 
ation that he has already declared to 
be unacceptable. The only question 
still on the table is whether he under- 
stands the consequences of taking the 
medication 1 can now legally pre- 
scribe to him, and whether he still 
wants to use it. 

"Jim, do you remember who I am 
and the discussions we had about your 
taking medicine to end your life?" 

Jim reacts with a visible internal 
struggle, and I don't know whether his 
block is in receiving and processing 
my question, or in articulating an 
answer, but clearly the question is too 

"Jim, do you want the medicine to 
put you to sleep?" 

Jim stares for a moment, then 
begins nodding. "Sleep," he manages. 
He puts his hands together as though 
starting a prayer, then cants them, lays 
his cheek on his hands in the universal 
sign of sleep, and nods \-igorously, 

"I think that's clear," his father says. 

The only remaining act is to get the 
medication to them as quickly as pos- 
sible. I give final instructions, say 
goodbye to Jim and his parents, and 
then, alone, I cry. 

He puts his hands togetlier as though starting a prayer, then 
sleep, and nods vigorously, emphatically. 



Minnie is someone I would not have wanted to cross when she was 
to herself about the cancer cells. 'TU get those suckers any wa\ 

The Sleep of Death 

hen I pulled into 
the drivew'ay, the 
house seemed unnat- 
urally quiet and isolat 
ed, a house turned 
inward. Harold, thin and 
pale, was sitting at the 
dining room table next to his oxygen 
tank, with the oxygen line running to 
his nasal tube. In front of him was a pile 
of small medical devices. An engineer 
who had lived with an oxygen tank for 
13 years, he had im'cnted a simple clasp 
device to help control oxygen hnes. He 
was assembling them to give to nursing 
homes and hospitals. The muscular 
work required for his thumb and fore- 
finger to pick up the cquix'alent of a 
paper clip and snap it to a thin plastic 
necklace took all the oxygen his one 
remaining and damaged lung could 
supply and still allow his brain to func- 
tion. He would assemble the necklaces 
for half an hour, then he would rest and 
maybe sleep. He felt the de\'ices were 
his one contribution to society. 

Nine months ago, Harold had been 
given six months to live. Respiratory 
failure is notoriously hard to predict, 
but for Harold, there was no question 
about the outcome. Each day he lost 
more weight, and his brain struggled to 
function with less oxygen and more 
retained carbon dioxide. And each day 
he continued to smoke, by maneuver 
ing the cigarettes around his nasal tube. 

The first physician who had been 
consulted had withdrawn upon learn- 
ing that Harold continued to smoke. 
But a contributor to his respiratory fail- 
ure was the lung lost to tuberculosis 
when he worked in the Army Medical 
Corps. If he had had two lungs — even 
emphysematous smoker's lungs — he 
would not now be facing death. 

Harold could choose a "natural" 
death, which his lung speciahst had 


described to him as a progressive 
obtundation, longer and longer .sleep- 
ing spells, and, at its, a final sleep 
in which his brain simply would no 
longer be able to feel the oxygen lack, 
no longer muster the strength to take 
another inadequate, unsatisfactory 
breath. Or he could choose what some 
would call an "unnatural" death, by 
taking a pHl that would make the next 
sleep just a tad too deep to allow his 
waning respiratory drive to continue. 
UntU either of those events happened, 
he would spend each day waiting, won- 
dering, parceling out each muscle flick, 
with its inevitable oxygen demand. 

"The worst of it is the panic 
attacks," he told me. "I get a smother- 
ing feeling that I can't breathe — and I 
can't. I struggle to breathe, and my 
brain feels like it's drowning. I ha\e 
medicine I can take for the attacks, but 
I can't control them." 

Harold was fully plugged in with 
hospice visitors, and he appreciated 
their visits. At the very least, they 
broke up his social isolation. Beyond 
that, there wasn't much that could be 
done for him. He was permanently 
tied to an oxygen tank; he knew every 
drug, every treatment, every side 
effect. He simply needed more oxygen 
and less carbon dioxide in his blood. 

"I don't know whether I'm really 
going to do it," he said, referring to 
taking the lethal dose. "Some days I 
think not and some days I think I 
want to. More of those lately, as I get 
weaker. But I really want the choice. 
When it gets most horrible, I can't 
stand the thought that it could go on 
fore\'er that way. If I had the medicine 
here, I wouldn't get so panicked. I could 
take the bad times better because I'd 
knov\' I wxiuldn't have to. I could stop it 
if I wanted." I recognized his logic 
from my work with patients suffering 
from panic attacks. Sometimes just 
carrying panic extinguishing pills in 
a pocket is enough. 

"I want Harold with me for as long 
as possible," his wife said. "But he's the 
one who has to suffer, and I don't want 
him to suffer any more than neces- 
sary." She held out a photograph of a 
handsome, vigorous man with 50 
pounds more muscle than Harold has. 
"This is what my Harold looked like 
when he was healthy," she added. 

Harold's biggest fear is that, if his 
death is listed as a suicide, his wife 
wUl lose all her veteran's widow bene- 
fits. Otherwise, money plays no part in 
his decision. 

I leave the house with my mind run- 
ning through a list of doctors who owe 
me a favor and may be wilhng to do 
the necessary house call to complete a 
consultation. I keep thinking that 
Harold won't go through with it; he 
just wants the choice, the control. 
Months later, I learn, Harold did 
indeed take the medication, after he 
had de\-eloped massive edema and felt 
uncomfortable bevond relief. 

Not Going Gentle 


mnie is a 

among those who 

know her. Her 
husband's retire- 
ment is a hberat- 
ing event. Now 
they can indulge 
her life's passion: travel. While they 
ha\'e their health, Minnie, the spark 
plug, uses her sharp wit and intrepid 
attitude to intimidate anyone who 
dares to present obstacles as they tra\-- 
el the world. They tour Europe and 
Asia, returning to Eugene only to check 
in with their children and grandchil- 
dren for life e\'ents and holidays. And 
while at home, Minnie invigorates 
friends and neighbors with her 
accounts of their travels and, most 
importantly, her attitude toward life. 

1 hear about Minnie weeks before I 
am approached to act as consultant. My 

Wealthy, and maybe not even now. I can imagine her chuckling 
I can," she'd say. "Fm not done yet." 

wife's coworker keeps talking about a 
neighbor, a fantastic elderly woman 
who is near death but whose mind and 
attitude are as sharp as e\'er. Her body is 
racked and d\'ing, yet her mind and 
spirit are untouched by the process. If 
she could, Minnie would have her 
deathbed rolled onto a tour ship. 

I read Minnie's chart. Her colon can 
cer has spread to her li\'er, and she is 
put through the usual rounds of 
chemotherapy, which do induce remis- 
sions and buy time. But finaUy she has 
reached the stage in which further 
chemotherapy is considered useless. 
The damage to her body will be greater 
than the damage to the cancer. 

Minnie does the equivalent of a 
wartime fighting unit oxcrrun by the 
enemy; she calls the bombs in on her 
self. She insists on another round of 
chemotherapy. Minnie is someone I 
would not ha\e wanted to cross when 
she was healthy, and maybe not e\cn 
now. I can imagine her chuckling to 
herself about the cancer cells. "I'll get 
those suckers any way I can," she'd 
say. "I'm not done yet." 

Minnie lives up to her advance 
billing. In a somber house, alone with 
her husband, her body a bony, jaun- 
diced squiggle lying on its side in her 
bed, her belly bloated with liver can 
cer and fluid beyond the swelling of 
pregnancy, she reveals her wit. 

"This process is boring me to death!" 

"Are you in any pain?" 

"Not really. I'm uncomfortable, this 
belly. It's the weakness, and the nausea, 
but I've got pills for that. The worst of 
it is just ha\ing to he here and watch 
this happen to me. And there's nothing 
I can do about it. I mean it: this is boring. 

"I don't want to die," she adds. "I want 
to see my grandchildren grow up. I want 
to travel, see the world, meet people, H\'e 
life. But if I can't do that, then heck, l\t 
got no use for this process." 

Her hospice worker has come and 
gone for the day. Her husband is now- 

functioning as Minnie's arms and legs, 
fetching for her, waiting on her. 

Minnie's mental competency is not 
in question, but depression could stOl 
be an issue. I ask her husband whether 
her feelings about a planned death ha\e 
changed or are out of character. 


"Has there been a dramatic change 
in her outlook on this issue in the last 
few weeks or months?" 

"No. Hell, she's always talked like 

There reall)' wasn't too much more to 
say, not as a consultant. Another doctor 
would actually prescribe the medicine. 
But Minnie liked ha\ing an audience, 
and it .seemed to be a relief to her to 
ha\'e someone she could talk to about 
this now- all consuming matter, so I 
stayed far longer than needed. 

I was struck at the contrast between 
this scene, her isolation — even with her 
family members, friends, neighbors, 
and hospice workers — and the lofty, 
all-knowing, pubhc and congressional 
debate on this matter. Where was e\'en 
one of those senators or congressmen 
now, to explain to Minnie how and 
why it was necessary, in these final 
hours of her hfe, to die their way, as 
opposed to her way; to explain to Min 
nie what a great relief it would be to the 
living that the decision had been left to 
their God rather than hers. 

Fate had dealt Minnie a card she 
couldn't control, and death was ho\'er- 
ing. She had only two choices: to end her 
life, or to prolong her suffering in the 
belief that it would serve some pur- 
pose — perhaps God's plan, which, had 
she that faith, might make perfect sense. 
In the absence of such faith, though, it 
made httle sense to her, and thus made 
her suffering seem all the more acute and 
pointless. Minnie, I knew, had no strug- 
gle with her faith. The uncertainty about 
the plan had to lie with those who 
would insist that she gi\'e up her need to 
control and submit meekly to their way. 

"One thing, Minnie," I said. "You are 
so weak now, and you are very dehy- 
drated and getting more so every hour. I 
would guess at this rate, within a day 
\-ou will lapse into a sleep and then a 
coma and, without feeling or experienc 
ing a thing, you will die naturally. Your 
fourteen day wait before you get the 
medicine won't be up for another four 
days. You don't ha\c to do this. In fact, 1 
don't think you will get to do this unless 
you soh'c the dehydration problem." 

Minnie thought about this, her brain 
like molecules in Brownian motion 
bouncing inside the walls of her skuH. 
She then began the long, laborious, 
exhausting process against gravity, 
nature, and fate, human wiU against 
d)ing body, to lift herself to a sitting posi- 
tion. Suddenly she had a goal, a purpose. 

"Fred, would you bring me a glass of 

And to me, "I'll get this water 
down and keep it down somehow. 
Thanks, Doc!" 

So many questions and issues emerge 
from these experiences that ne\'er seem 
to be expressed in the legal and con- 
gressional debates. Clearly, control — 
not pain — is the issue: whether indi\id 
uals have the right to control the 
method of their dying, or whether the 
go\ernment has the right to demand 
that the control be wrested away for 
some greater purpose. These patients 
are not worried about pohtical wran 
gling o\'er the Death with Dignity Act; 
in the process of dying, they are simply 
clinging to what httle vestiges of con 
trol their fate has left them. 

Minnie rallied her remaining strength, 
prolonged her consciousness and life to 
acquire the medication, and then, her 
position overrun by invaders, called in 
the ultimate chemical bomb. Get them 
suckers! ■ 

Peter M. Patricelli 71 is a physician with 
UcKenzic Famih Practice m Springfield. 




An unbroken chain of HMS teachers 
and students have believed that 
medicine must respect the link 
between the mental and the physical 

by Eugene I. Taylor 


physiological research, liked to 

recount a story about voodoo 

death, or the power of taboo 

among the Maori of New 

Zealand. A young man visiting 

an older friend's home was 

served wild hen, which the 

younger generations were prohibited from eating. The young man ate the 

meal, because he was assured that it did not contain wild hen. 

Several years later, the older man asked the younger if he would eat wild 
hen. The young man replied that he would ne\'er violate the taboo. The 
elder laughed and confessed that he had once tricked him into eating the 
hen. The younger man grew terrified and began to experience physical dis- 
tress. Within 24 hours, he was dead. 

A taboo. Cannon concluded, could produce "a fatal power of the imagi- 
nation working through unmitigated terror." Stirred by such stories. 





thought science should not 
replace the physician's 
proper focus in medicine- 
the patient. 

Holmes grumbled that the overemphasis on pure science in his own 

Canmin jiiincd a lineage of Harvard 
physicians who have pondered the 
connection between mind and body. 
From OUver Wendell Holmes's cham- 
pioning of old women's folk remedies, 
to William James's investigations into 
hypnosis, to Herbert Benson's disco\'- 
ery of the relaxation response, an 
unbroken chain of teachers and stu- 
dents ha\'e believed that medical prac 
tice must take into account the inex- 
tricable link between the mental and 
the physical. 

Thumps and Doubts and Guesses 

Mind/body medicine at Harvard can 
be traced at least as far back as Oliver 
Wendell Holmes, Class of 1836, who 
served as the Parkman Professor of 
Anatomy and Physiology at HMS 
from 1847 to 1882. Holmes earned 

wide recognition for his work on 
puerperal childhood fever, especially 
his controversial theory that physi- 
cians bore responsibility for the high 
mortality rate among infants because 
they moved directly from the autopsy 
room to the birth chamber without 
washing their hands or changing 
their clothes. 

Beyond his involvement in medi- 
cine, Boston's "beloved physician" 
was also a man of letters. He suffered, 
he once said, from the lifelong dis- 
ease called Cacocthcs scribcndi, the 
"itch to write," and he defined "lead 
poisoning" as the disease that afflicts 
every good writer once the mind 
makes contact with printer's type. 
Holmes combined his literary and 
scientific skills to communicate the 
mind/body connection to younger 
physicians, ultimately championing 

the notion of physician as naturalist, 
even as medicine was \cering toward 
the microscopic, the chemical, and 
the quantitative. 

Holmes believed that the world of 
ideas, feelings, and beliefs could have 
real effects on the body. "So long as 
the body is affected through the 
mind," he said, "no audacious device, 
even of the most manifest dishonest 
character, can fail of producing occa 
sional good to those who yielded 
an implicit or even a partial faith." 
Holmes also acknowledged that un 
conscious factors may shape our 
actions. "A man who has paid twenty 
five dollars for his whistle," he said, "is 
apt to blow it longer and louder than 
other people." 

The most important contribution 
Holmes made to understanding the 
mind/body cormection, however, was 



used his scientific and literary 

skills to communicate the links 

between mind and body 



was the first at Harvard to 

contribute directly to the 

experimental analysis of the 

mind/body problem 


chose to focus on the scientific 
study of emotions when studies 
of the cerebral cortex prevailed 



ime was already interfering with the doctor/patient relationship. 

the humanity he brought to the prac- 
tice of medicine. He stood solidly 
against quackery, but believed that an 
old woman who knows how to make 
and apply a poultice is a better healer 
than the celebrated pathologist who 
"explores and thumps and doubts and 
guesses, and tells his patient he will 
be better tomorrow and so goes home 
to thumb his books o\er and make out 
a diagnosis." 

Holmes also grumbled that the 
overemphasis on pure science in his 
own time was already interfering with 
the doctor patient relationship. His 
critics branded him as backward and 
anti-scientific, yet his contention was 
that science should never replace the 
physician's proper focus in medi 
cine — the patient — for it is in the con 
text of the doctor/patient relationship 
that healing takes place. 

Mind Over Matter 

Direct heir to the medical legacy of 
Holmes — as well as the transcenden 
talist literary heritage of Holmes and 
Ralph Waldo Emerson — was William 
James, Class of 1869. Although James 
was the first at Harvard to cross disci- 
plinary boundaries between physiolo- 
gy and philosophy and to contribute 
directly to the expermiental analysis 
of the mind/body connection, he did 
not act alone. 

Among his HMS classmates were 
Henry Pickering Bowditch and James 
Jackson Putnam. Bo\\ditch founded 
the first laboratory of experimental 
physiology in the United States, locat 
ed on the third floor of the Medical 
School, which was then directly 
across from Massachusetts General 
Hospital. There, the three of them 

worked on pioneering experiments in 
brain neuropathology. Eventually 
Putnam went on to found the neu- 
ropathology laboratory at Harvard, 
and James started the University's 
first laboratory devoted to experi- 
mental psychology. 

The three colleagues held dramati- 
cally different views on mental sci 
ence, however. Putnam and Bowditch 
embraced the German idea that labo- 
ratory investigation is the only pure 
science; all else is applied. James 
acknowledged the importance of the 
German contributions to mental sci- 
ence, yet proceeded to conduct a series 
of investigations transmuting into 
psychology the techniques of Erench 
experimental physiology, which 
emphasized la cUniquc, or bedside 
teaching. The result was a new field 
that came to be known as expcrimen- 


promoted communication 

between physiologists and 

practitioners of other 



^- t 



coined the phrase 

"relaxation response" and 

helped found the field of 





James investigated the ofibeat phenomena that had fascinated him for 

tal psychopathology, which James 
offered as a graduate course at Har- 
vard. There he taught students hypno- 
sis, automatic writing, and other 
means of dissociating consciousness 
in order to artificially reproduce the 
symptoms of functional disorders of 
the nervous system, such as hysteria 
and neurasthenia. Consciousness, for 
James, was a biological fact with evo- 
lutionary consequences. Through con- 
scious choices, the mind exerts an 
influence over the body, while the 
state of mind is influenced moment to 
moment by a host of unconscious 
physical conditions. 

Particularly during the 1890s, James 
also im'estigated the offbeat phenome- 
na that had fascinated him for most of 
his professional life, such as clairvoy- 
ance, telepathy, mediumship, and reli- 
giously induced states of consciousness. 
He behex'ed that many lay mental heal- 
ers were already ahead of medical sci- 
ence in understanding the mind/body 
connection; their methods were simply 
intuitive and unsystematic. At one 
point, he even mounted a vigorous 
defense of spiritualists and mental heal- 
ers, believing that instead of trying to 
regulate them out of existence, the state 
legislature should sohcit medical sci- 
ence to verify or dispro\'e their claims. 

James's own studies had hinted that 
ideas could be implanted in a highly 
suggestible subject — usually a Har- 
vard student — that could cause paral- 
ysis, contractures, fainting, choking 
and, in rare cases, even bleeding. He 
also demonstrated that these effects 
could be instantaneously reversed 
through suggestion; a thought could 
create — or banish — a physical symp- 
tom. It was precisely James's innova- 
tive acceptance of such ideas that 
attracted a younger generation of HMS 
.students, particularly Walter Cannon. 

The Fight-or-Flight Response 

Walter Cannon, Class of 1900, origi 
nally a shy and retiring boy from rural 
Wisconsin, rose to become the 

Higginson Professor of Physiology at 
Harvard and one of the preeminent 
figures in medical science in the 
twentieth century. He chose to focus 
on the experimental study of emo- 
tions in an era in which studies of 
the cerebral cortex prevailed, and 
through this work brought the mind/ 
body problem furthest into the arena 
of an exact science. 

As an undergraduate. Cannon fell 
under the influence of Wilham James, 
whose theory of emotion, by then paired 
with the work of Danish in\'estigator 
Walter Lange, was just then attracting 
international attention. The James- 
Lange theory was hotly debated follow- 
ing the publication of James's Principles of 
Psychology in 1890, and to help him 
respond to his critics, James assigned 
Cannon the job of scouring the scientif- 
ic literature for all new work on emo- 
tion. The result was a detailed under- 
graduate essay that steered Cannon on a 
lifelong scientific quest to understand 
the digesti\'e, the autonomic, and the 
affective physiology of humans. 

Fascinated by the psychological 
cases that James had gathered to illus- 
trate his ideas. Cannon began to seek 
historical, religious, and anthropologi- 
cal sources for additional examples 
of the ability of people under stress 
to perform extraordinary feats of 
strength and endurance. He even 
called on a neighbor who had served 
with General Custer for a firsthand 
account of the psychological methods 
both the Army and the Indians had 
used to prepare for battle. 

Cannon's most enduring legacy to 
medical science was undoubtedly his 
notion of the fight or flight response — 
his recognition that the body reacts to 
stress and danger by creating a height 
ened chemical environment that is 
mobilized for action. He also conduct 
cd pioneering research into the neuro- 
humoral basis of emotion, which occu 
pied him into the late 1920s, after which 
he turned his attention to what we 
would today call the chemical media 
tion of ncr\-e impulses at the synapse. 

Cannon is also remembered for his 
investigation of unusual phenomena 
associated with the mind/body con- 
nection. In addition to his studies with 
Walter .Alvarez on \'oodoo death. Can- 
non took a cue from James and gave lec- 
tures to medical students on hypnosis 
and suggestion. Later in life, he tried to 
summarize his physiological work 
within the larger context of sociology, 
looking at physiology both systemati- 
cally and holistically. This approach 
was again partly attributable to the 
influence of James, who had steered 
Cannon away from philosophy and 
toward medicine. Cannon never aban- 
doned his philosophical impulse, how- 
ever, and continued to de\-elop it on his 
own terms, pioneering in such con- 
cepts as physiological homeostasis. 

Carrying on the Tradition 

The key figure who helped usher 
mind/body medicine at Harvard into 
the modern period was the late A. Clif- 
ford Barger '4 3 A, the Robert Henry 
Pfeiffer Professor of Physiology. Born in 
Greenfield, Massachusetts, he gradu- 
ated from Harvard College and HMS 
before interning at Peter Bent Brigham 
Hospital. He joined the Army, where, 
after basic training as a lieutenant, he 
conducted medical research. 

.•\fter the war, Barger returned to 
HMS, where he remained for the rest of 
his career. Mild-mannered and modest, 
he is remembered as a beloved profes- 
sor who took a deep interest in the 
indi\idual lives of his students. A dis- 
tinguished mentorship award has even 
been named in his honor. 

Carrying on in the tradition of 
Walter Cannon, Barger focused on 
problems of the cardiovascular system 
while at the same time promoting 
interdisciplinary communication 
between physiologists and practition- 
ers of other disciplines. He became a 
leading figure in the pathophysiology 
of the cardiovascular system, the first 
to experimentally produce heart fail- 
ure in animals, and the first to 



Host of his professional life, such as clairvoyance and telepathy. 

William James believed 
that the material and 
spirit worlds could com- 
municate. Here he joins 
Mrs. Walden in seance. 

Benson had noted that a patient s blood pressure always rose when 

describe the physiology of congestive 
heart failure. 

Like Cannon, Bargcr was a keen ad\o 
cate of animal experimentation. He was 
part of a generation of scientists who 
promoted a whole animal physiology, in 
which physiology was the integrating 
science that pro\'ided physicians with a 
picture of the total functioning organ- 
ism. As a spokesman for that \iew, with 
Saul Benison and Elin Wolfe, he 
authored a biography ot Cannon. 

Barger's era was soon overshadowed, 
howe\'er, by dramatic new dex'elop- 
mcnts in the brain sciences, which 
required a more complex, reductionis 
tic, and compartmentalized definition 
of the field in a \'ariety of new subspe- 
cialties. He li\-ed to see physiology in the 
context of the whole organism signifi- 
cantly diminish as a subject in the med- 
ical curriculum. Meanwhile, he fired the 
imagination of numerous students who 
took his holistic \iew into new areas of 

WAX MUSEUM: Beginning in the 1870s, William James relied on wax devices as 
teaching tools in the Harvard Psychological Laboratory. 

medicine. One of these students who 
would go on to distinguish himself in 
the field of mind body medicine was 
Herbert Benson. 

The Relaxation Response 

After interning in medicine and holding 
a fellowship at the Thorndike Memorial 
Laboratory at Boston City Hospital, 
Herbert Benson '61 returned to work 
under Barger in 1967, first as a fellow in 
physiology and then as an instructor in 
physiology and medicine at HMS. 

Benson had noted in his own prac- 
tice that a patient's blood pressure 
always rose when measured in the 
doctor's office, often leading to over- 
medication. He attributed this eleva- 
tion to the effects of stress — not at 
that time a well recognized concept in 
medicine, but a topic of considerable 
experimental interest to Barger. 

Benson approached his former 
teacher for an explanation, and Barger 
brought him into a remarkable experi 
mental collaboration with some stu 
dents of psychologist B. F. Skinner in 
order to develop an animal model 
demonstrating the effects of stress on 
hypertension. Succeeding beyond his 
original expectations, Benson helped 
found the field of biofeedback and, in 
collaboration with Gary Schwartz and 
David Shapiro at Boston City Hospi- 
tal, went on to develop a human model 
showing the connections between 
stress and hypertension. 

In the midst of these imestigations, 
Benson also began studying transcen- 
dental meditators, noting that they 
were able to achie\e deep states of 
physiological relaxation that seemed 
exactly the opposite of Cannon's 
fight or flight response. He named 
this effect "the relaxation response." 
Within the autonomic nervous sys- 
tem, he found, decreased sympathetic 
tone has a significant impact on 
stress- related states, including hyper- 
tension, anxiety, various forms of 
pain, and mild-to-moderate forms 
of depression. 




easured in the doctors office, often leading to overmedication. 

BELOVED PROFESSOR: A. Clifford Barger fired the imagination of numerous students >vho imported his holistic vievsr of medicine 
into their own chosen specialties. One student who distinguished himself in the mind/body medicine field was Herbert Benson. 

The relaxation response also has 
been associated with the physiological 
state that accompanies other forms of 
meditation and repetiti\'e prayer. Ben 
son has suggested, in fact, that the 
induction of the relaxation response 
may be a generic first step in achie\ing 
the various contemplative states associ- 
ated with the world's major religions. 

Coincidcntally, Benson conducted 
his experiments on the relaxation 
response on the \'ery site of the fight- 
or-flight response experiments per- 
formed 50 years earlier, in rooms 
where Cannon's charts still adorned 
the walls. Today, Benson is the found- 
ing president of the Mind/Body Med- 
ical Institute at Beth Israel Deaconess 
Medical Center. Known intcrnation 

ally, this program now has branches 
in hospitals and schools throughout 
the United States, and is an integral 
part of the Harvard University Health 
Services' progressive program in 
stress reduction. 

A Proliferation of Forms 

Today, various forms of mind/body 
medicine are found throughout our 
medical culture. Specialties such 
as psychophysiology, psychosomatic 
medicine, consultation liaison psychi 
atry, and medical psychology are all 
practiced throughout Harvard's more 
than two dozen teaching hospitals. 
Social medicine and therapies from 
non-Western cultures represent addi- 

tional developments in the medical 
sciences that capitalize on the mind/ 
body cormection. 

Indeed, the Uni\'ersity's more recent 
foray into the neurosciences — 
the Mind/Brain/Behavior Initiative — 
strives to foster interdisciphnary com- 
munication across the sciences in ways 
that produce entirely new and unfore- 
seen consequences for the way science 
is conducted and patient care is deliv- 
ered. These developments all have new 
names, but the ideas behind them have 
had a long and distinguished history at 
Harvard. ■ 

Eugene I. Taylor, PhD, is a lecturer on psychiatry 
at HMS and a senior psychologist on the psychi- 
atry sciyicc at Massachusetts General Hospital 



IN THE SAN: The author, 
John Stoeckle (in back, 
second from left), poses 
v/ith other patients at 
the Trudeau Sanatorium 
on Saranac Lake in the 



dence >viHi 
friends and 
family helped 
ease patients' 
worries that 
they would 
be forgotten. 

hen I was diagnosed wdth tuberculosis during 

my third year at HMS, I was reassured that "many doctors 
get TB but get over it." Indeed, in the 1940s, TB was almost 
an occupational hazard of hospital life, with our exposure 
coming from the wards, where patients with active, open 
cases were awaiting beds at the sanatoriums, and from 
autopsy rooms, where dissecting knives produced showers 
of acid-fast bacilli. Many health professionals up and down 
the East Coast — including medical students, residents, 
and nurses — contracted the disease and, although our exact 
numbers were never tabulated, they seemed great. 

To recover, some infected health professionals 
headed north to Trudeau Sanatorium at Saranac Lake 
in the Adirondacks, while others went to county or 
state sans. Those who were in the serxice during 
World War II went to designated Army or Navy hos- 
pitals if on acti\'e duty, and to private sans or Veterans 
Administration hospi- 
tals if not. Some stayed 
home to receive col- 
lapse therapies from 
pri\'ate physicians. 

Upon my diagno- 
sis, I was admitted to 
Peter Bent Brigham xx-s^ 

Hospital. After a week 
of bed rest, gastric cul- 
tures, chest films, and 
daily visits by the resi- 
dents (quick and friendly, as I had done a rotation at 
that very hospital six months before), I was sent 
away to "take the cure." I was admitted into 

Trudeau Sanatorium with a diagnosis of minimally 
active TB. As I prepared to leave Boston and all that 
was familiar, I worried that I \\'ould be forgotten. 
The ward attending, Howie Armstrong, reassured 
me that I would not. "HMS will have a place for you 
when you get out," he promised. 

Doctors as Patients 



After an admission 
checkup by Frank 
Epstein (then a sum- 
mer Yale extern, now 
the William Apple- 
baum Professor of 
Medicine at HMS), I 
was assigned to bed 

rest at Kerbs 1, a cure 
cottage inhabited by medical students, physicians, 
and medical researchers. We eight made up the 
"doctors" cottage" (despite the presence of six non 




physicians). Nurses who had been infected in \arious 
New York hospitals were clustered in cottages, too. 
In fact, health professionals occupied 10 to 20 
percent of Trudeau's 200 beds, and still more nurse 
and doctor "cures" were on the medical staff. "San 
doctors" were imariably cures who stayed on for 
clinical work and, sometimes, careers as chest 
physicians. .Although they did not necessarily self- 
disclose their illness, the supervising physicians — 
Gordon Meade from Rochester and the late Roger 
Nhtchell '34 from HMS — could be counted among 
the recent doctor cures. Seeing them at work gave 
us hope that we too would be able to return to 
clinical hfe. 

Dread and Hope 

In the early 1900s, sanatorium conditions had been 
grim. But in the 1940s, our experience was decided 
ly optimistic and, by contemporary standards, even 
luxurious. If TB was as it is today — a disease of 

poverty — this was not reflected in life at Trudeau. 
The san was not only a rest retreat, but an environ 
ment and community in which to learn and grow, if, 
of course, our disease didn't relapse. 

Although the diagnostic bad news that had 
landed us in the san initially made us alraid that we 
might die, our fears about ha\ing contracted a 
potentially fatal disease quickly relented. Our lack 
of symptoms, our newly converted tuberculin tests, 
and our chest films showing minimal infiltrate 
were signs that the disease had been caught early, 
which made us confident that our lives would be 
spared. And we knew that, even if our disease pro- 
gressed, there \\'as the promise of a ready cure with 
newly discovered streptomycin or one of the old 
collapse therapies. 

More disturbing to most of us than the physical 
discomforts of our disease were the psychological 
consequences of our diagnosis. Although we were 
not visibly stigmatized by an illness that only 
appeared on chest films, many of us considered our- 

Kerbs 1 Cottage 
attfie Trudeau 
became known 
as the "doctors' 



If we worsened, we would be transferred, worried and discouraged, 
and nurses gave daily back rubs. If we needed them, we received 

selves damaged goods. We blamed ourselves for 
what we perceived to be a weak resistance, which 
had rendered us vulnerable to a disease that had left 
classmates unscathed. 

Anxieties not only about our professional 
future, but also our personal lives nagged at us 
throughout the long days: Would we be forgotten? 
Should we tell everyone we had the disease? 
Would we meet someone who would reject us 
because we'd once been infected? 

Depending on our chest films, we were pre- 
scribed bed rest in monthly doses. Then we all 
faced the wait and worry about what our follow- 
up x-rays might reveal — relapse, resolution, or 
arrest — and the opinion on when we could get out 
of bed, or even out of the san itself. 

M yb 

TRUDEAU, N. Y., ^ 

V<f^f 194 












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A 3;i-s 


A Community of Consumptives 

Many of our anxieties melted away, though, in the 
everyday life of the san, where everyone was infect- 
ed and the diversions were plentiful. Wfe were in 
bed morning, noon, and night, with music and news 
provided by the Montreal station. The library pro- 
vided us with books — a chance to catch up on some 
of the Great Books left unread in college, or to live 
vicariously through the adventures of the charac- 
ters in all those novels we had neglected in favor of 
medical texts. After an afternoon snooze, we would 
play bridge and solitaire. Winter was freezing, but 
electric blankets kept our beds warm. In fine 
weather, we often slept on the cottage porches, 
each of which had two beds. 

Indeed, the cottage cure was really home care in a 
community of the sick — a collecti\'e, comprehensive 
experience barely fathomable by today's standards. 
We had meals-on-wheels, daily conversations with 
fellow com'alescents, brief weekly \isits by physi- 
cians, do-it-yourself bed care, and self-monitored 
temperature taking (our one-dollar thermometers 
helped us learn about the daily variations in body 
temperature that were not due to disease). If we 
worsened, we \\'ould be transferred, worried and 
discouraged, to the infirmary, where bed rest was 
strict, more tests were done, and nurses gave daily 
back rubs. If we needed them, we received collapse 
therapies, which meant longer, more uncertain stays. 

But with improved or even stable chest films, 
our bed-rest restrictions were gradually lifted and 
we could go to the main building for meals in the 
coed dining hall, where our long talks became 
group counseling, each of us with stories to tell. 
One gossip theme we never tired of was the unsta- 
ble disease of others. Continuing stability or x-ray 
improvement meant confident pride in our rested 
bodies and opportunities for increased activity. 

Small group outings provided means of escape 
from the rituals of bed rest. We could go to the rec 
hall, watch plays and musical performances at the 
on-campus theater, or partake in arts and crafts. 
Few took the spiritual path to healing by attending 
the chapel. 

In the winter, we could stroll the campus or even 
take a taxi to the lounge bar downtown to eat, drink 



to the infirmary, where bed rest was strict, more tests were done, 
collapse therapies, which meant longer, more uncertain stays. 

beer, and dance to the jukebox. In the summer, we 
would motorboat to Ecstasy Island on Lower Saranac 
Lake, for picnics and swims. These outings often pro- 
xided opportunities for "cousining," a euphemism for 
often illicit liaisons, sometimes between the single 
and married and e\'en bctvN'een nurses and patients. 
In addition to the social life associated with tak 
ing the cure were clinical opportunities to learn 
about TB and its treatment. When our cases arrest- 
ed, we might be chosen to join the medical staff 
as student externs. Our clinical experience might 
include helping take care of sicker patients in the 
infirmary; giving supervised pneumoperitoneum 
and pneumothorax collapse therapies; reading x 
rays; doing lung function testing; observing thora 
coplasties, phrenic nerve compression, and bron 
choscopies at Saranac Lake Hospital; and visiting 
nearby sans. Caring for fellow patients who were 
worsening gave us a powerful reminder that not 
everyone recovered from TR. 

Then and Now 

k*toi«^ lot 

when I returned to HMS in 1947 after 15 months 
away, my experiences of illness and of clinical work 
remained with me even as TB itself seemed to fade 
from clinical and public health practice. Trudeau 
closed in 1954, as did public and private sanatori 
ums around the country. With the advent of new 
TB drugs, treatment became an outpatient service. 

That old cure of isolation, rest, and open air was 
abandoned, with its prescriptive bed rest decried as 
misused, harmful, unproven, unnecessary, and — in 
today's health care market — far too costly. Such 
long-term retreats for healing are no longer used. In 
the history of a disease that has spanned centuries 
and killed perhaps more people than any other infec- 
tious disease, our cure seems like an anomaly. 

Today, people with TB are treated at home or on 
the street, where urban air differs markedly from 
those mountain breezes, rest is not an option, and 
the support offered by a communit)' of infected peers 
no longer exists. For patients today, so much of that 
old common experience of illness is missing. With- 
out any institutional group life for the cure, a vast 
unconnected population of tuberculars take their 
pills all alone. 

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In fact, only one in fi\'e people now infected with 
TB receives adequate treatment. To control and cure 
this devastating worldwide epidemic, the World 
Health Organization has adopted the treatment strat 
egy of directly observed therapy, short course 
(DOTS), which relies on fast, economical smear tests 
for diagnosis, followed by a six-month regimen of 
standard drugs. Yet the new resistant strains require 
a different tactic. In the face of epidemics of mul- 
tidrug resistant TB, Paul Farmer '90 and Jim Young 
Kim '91, co-directors of the Program in Infectious Dis 
ease and Social Change at HMS, have joined with the 
World Health Organization in advocating DOTS- 
Plus, which in\'olves a combination of longer individ- 
ualized therapy and daily health worker home visits. 

Each year, more than two million people die from 
TB, and another eight million develop it. TB is again 
seen as a disease of poverty, devastating communi- 
ties in developing countries and inner cities. These 
alarming trends make our life at Trudeau seem, in 
retrospect, more like a stay at a middle-class coun- 
try club than a medical regimen. With multidrug- 
resistant TB on the rise, even more generations are 
becoming vulnerable to this persistent killer. Ironi- 
cally, our modern treatments are providing us with 
dangerous new variations of the same old germ. ■ 

]oh.n D. Stoecfele '47 ii HMS professor of medicine emeritus and 
a physician at Massachusetts General Hospital. 

On cold winter 
nights, $39.95 
electric blan- 
kets heated 
the cottage 



Committed to 

relieving human 



Henry Isaiah Dorr 

gave the anesthesia 

field an early 


by John P. Bunker 


physician and dentist, offered Har- 
vard $2,000 a year — tfie income from 
a $63,000 gift — to establish an 
endowed chair devoted to research 
and teaching in anesthesia. President 
A. Lawrence Lowell was almost 
scornful in his reply "I ought to say 
that $2,000 is not as much as we pay 
for most full professorships even in 
the clinical departments, where a man 
gives a part only of his time to the 
school," he wrote. "No doubt the word 
'chair' would not necessarily mean a 
full professorship." 

Dorr was determined, however, and 
answered, "I would like the word 'chair' 
to mean a full professorship, the occu 
pant of which to be a man of eminence." 
By 1917, he was able to offer $100,000, 
which was accepted, and the Henry Isa- 
iah Dorr Chair in Research and Teach- 
ing in Anaesthesia and Anaesthetics 
was established, the first endowed 

chair of anesthesia in the world. By the 
time of his death in 1927, Dorr had 
increased his bequest to $200,000. 

The bequest to Harvard was made. 
Dorr said, "for the benefit of the med 
ical and dental students of Harvard 
College and suffering humanity." Gifts 
to Temple University were similarly 
designated, and a final bequest to a 
society for the prevention of cruelty to 
animals was a donation to "poor, help 
less, dumb animals for their protection 
and well-being." 

Dorr's lifelong interest in anesthesia 
was a manifestation of his deep con 
cern for suffering. He wrote, in his 
unpubhshed papers, "Of all the discov- 
eries of value in medical science of the 
past, present, and — if I may be 
prophetical — future, none have or can 
excel that of anesthesia." He quoted 
"an eminent teacher and surgeon" as 
saying, "The introduction of anesthesia 
in 1846 abohshed, wiped out of exis- 



An etching of William T. G. Morton, a Boston dentist, conducting the first public demonstration of ether at Massachusetts General Hos- 
pital on October 1 6, 1 846. John Collins Warren conducted the surgery, which >vas the removal of a tumor under the patient's jaw. 
The patient, Gilbert Abbott, declared that he had felt no pain during the operation and was discharged less than two months later. 

tence at a step a sum total of human 
suffering so stupendous that the mis- 
eries of \\3LT, famines, and pestilences 
are as nothing in comparison." 

To his compassion. Dorr added a 
reverence for science and an aware- 
ness of its cost. "Reflect upon the mar- 
velous progress that has resulted from 
endowed Research Laboratories, made 
possible by praiseworthy men of 
wealth, and who study the public wel- 
fare in times to come," he wrote. 
"These are the men whose names and 
glorious deeds will be transmitted 
to posterity." 

Dorr's respect for knowledge and 
appreciation for the value of money 
were those of a self made man. He was 
born in 1844 in Ipswich, Massachu- 
setts, into a family he described as 
"poor in worldly goods." His mother 
died "before his memory" and his 
father when Dorr was six. He was 
sent to live on the New Hampshire 

farm of his father's widowed sister. 
Subjected to "extreme privation and 
cruelty" by his aunt's new husband, 
he fled at night by stage coach at the 
age of eight, "the commander-in 
chief," he said, "of five red cents, 
earned honestly, however, by selling 
roasted chestnuts." 

Dorr attended Harvard in 1869 and 
1870, after three years of serving in the 
Union Army during the Civil War. He 
fought every engagement during 
those years, he said, and, although 
three horses were shot from under 
him, he was fortunate to "come 
through without a scratch." He was 16 
years old when he first donned his 
blue uniform. 

"I had to lie to get in," he said, "but 
they forced me to. A year before that, 
when I told them my right age, they 
would not have me. But it was a white 
lie, I think, for I prevaricated in order 
to serve my country. So I trust that the 

little fib will not be counted against 
me. I did pay for it, though, for I virtu- 
ally had to start my schooling all over 
again when I received my discharge, 
and it naturally set me back three 
years. But I don't regret it." 

Elizabeth Snow Bissett, Dorr's 
great-niece, believed that his experi- 
ences in the war fired his resolve to go 
into medicine. "Whether Dorr's early 
and vivid memory of his emaciated 
father dying from a wasting disease 
turned his interest subconsciously 
to\\'ards medicine as a career, I can 
only conjecture upon," she wrote. "He 
believed from an early age that he pos- 
sessed both the capabilities and tenac- 
ity to become 'an educated man.' His 
determination to train for a career in 
medicine, however, appears to date 
from his return from the Civil War at 
age 19, with three years of combat duty 
and with S3 50 of army pay credited to 
his account." 



"Of all the discoveries of value in medical science of the past, 
prophetical — ^fiature, none have or can excel that of anesthesia." 

Dorr's savings for his education 
grew so slowly that a prosperous den- 
tist finally persuaded him to accept 
financial assistance, on the condition 
that Dorr abandon his plan to study 
medicine and take up dentistry 
instead. He enrolled as a dental stu- 
dent at Harvard and, following his 
graduation, practiced dentistry for 
several years. His ambition to become 
a physician was not realized until he 
was graduated from Jefferson Medical 
College at the age of 39. 

In 1878, Dorr was appointed 
adjunct professor of practical den- 
tistry at the Philadelphia Dental Col- 
lege (later to become the Temple Uni- 
versity School of Dentistry) and was 
promoted to professor of clinical den- 
tistry a year later. He introduced the 
teaching of anesthesia into the dental 
curriculum, writing in his unpub- 
lished notes that it was, as far as he 
knew, "the first systematic course of 
instruction in anesthetics and anes- 
thesia." In 1889, Dorr's appointment 
was changed to professor of the prac- 
tice of dentistry, anesthesia, and 


Dorr described his use 
of nitrous oxide and 
oxygen anesthesia, 
adding an excerpt 
from a local news- 
paper column: 
"Many experiments have been made 
in the use of anaesthetics, but none 
has been so successful as the one 
which took place at the Philadelphia 
Dental College last Friday afternoon. 
This is the first operation with 
nitrous oxide gas in combination with 
oxygen for an anaesthetic in short sur- 
gical operations. 

"The patients under this combina- 
tion of gases," the newspaper column 
continued, "do not exhibit the excite- 
ment or groaning as when under the 
influence of nitrous oxide or other 
administrations. The hps retain their 
usual color and the patients experience 
but little acceleration of the pulse. The 
duration of the anaesthetic is longer 
and the operation for the administra- 
tion is quite simple. It is a very recent 
importation from England and as this is 
the first use of it in the United States, 
Philadelphia scientists have displayed a 
great amount of interest." 

Dorr was apparently unaware that 
Edmund Andrews had administered 
oxygen with nitrous oxide in Chicago 
15 or 20 years earlier, in 1868. Never- 
theless, it was an interesting and 
noteworthy accomplishment. What 
other scientific, medical, or dental 
contributions Dorr may have made are 
undocumented. His obituary in the 
Winchester, Massachusetts newspa- 
per stated that he had authored sever- 
al books on anesthesia, and a bronze 
plaque at the dental research labora- 
tory he endowed at Temple Universi- 
ty described him as "an ardent 
research worker." 

Dorr resigned from the faculty of 
the Philadelphia Dental College in 
1896, apparently because of ill health. 
He suffered from "a kidney condition" 
and chronic asthma, and his physi- 
cians gave him only six months to live. 
His resignation was further precipi- 
tated by the college's proposal that 
each faculty member contribute 
$5,000 to enable it to purchase land 
and erect a new building. Dorr cited 
his failing health as the reason he 
could not participate. Yet he survived 
his physicians' gloomy prognosis by 
30 years. 

In the years following his retire 
ment. Dorr and his wife apparently 

traveled a good deal, perhaps in search 
of relief from his asthma. It is not 
known whether he practiced medi- 
cine or dentistry. In 1914, Dorr and his 
wife moved to Massachusetts to live 
with a niece. 

During the final years of his life. 
Dorr occupied himself primarily with 
his investments, by which he hoped to 
maximize his bequests. He was mod- 
erately successful: assets of approxi- 
mately 563,000 in 1910 appreciated to 
S100,000 in 1917, and to S265,000 at 
the time of his death ten years later. 
Dorr achieved this growth by invest- 
ing in municipal and railroad bonds 
rather than stock, which he consid- 
ered too risky. Although Harvard's 
administrators fretted under the con- 
straints imposed by our "fussy and 
suspicious friend," Dorr's caution was 
vindicated in the 1929 stock market 
crash, which his endowed funds sur- 
\'ived without loss. 

If Dorr was thrifty and shrewd in 
his financial activities, his purpose 
was solely to protect his bequests. He 
even took precautions to ensure that 
his wife could not interfere with his 
plans after his death. She was to 
receive all income derived from the 
estate "in accordance with her 
requirements and comfort, during her 
life." If, however, she "should take 
against my will, I absolutely revoke all 
provisions made in her behalf and for 
her benefit." 

As it turned out, his innumerable 
cousins and more distant relatives did 
make an unsuccessful attempt to 
break the will, and Harvard tried to 
circumvent his plans as well. In 1919, 
long before Dorr's death, HMS Dean 
David Edsall solicited and obtained 
President Lowell's permission to use 
the Dorr Fund for pharmacology 
rather than for anesthesia, "a subject," 
he wrote, "in which it reallv is unnec- 



present, and — if I may be 


essary and undesirable to have a full 
professor and certainly undesirable to 
have an actual department." But the 
funds would not become available for 
more than ten years. 

Dorr died in 1927, his wife died two 
years later, and the estate was settled 
in 1930. By this time, the value of a 
research chair in anesthesia was recog 
nized, largely due to the efforts of 
Edward Churclull, who had recently 
been appointed professor of surgery 
at Massachusetts General Hospital. 
Churchill saw the great potential value 
of an academic program in anesthesia, 
one that could direct attention and 
effort to the many important physio 
logical and pharmacological problems 
he had encountered as a pioneer in tho 
racic surgery. 

A search committee was convened 
in 1933, with Churchill as chairman. In 
1936 the committee selected the late 
Henry K. Beecher "32, then a young 
surgical resident at Massachusetts 
General Hospital. In 1941, after a five- 
year probationary period, Beecher 
became the first Henry Isaiah Dorr 
Professor of Research and Teaching in 
Anaesthesia and Anaesthetics. 

Dorr made his bequests to Temple 
University during the last two years 
of his life. As he had instructed, the 
funds were used to build a laboratory 
for research and teaching in oral 
pathology. The university urgently 
needed a laboratory and did not 
require much persuasion to imple 
ment Dorr's wishes. But, with typical 
determination to leave nothing to 
chance. Dorr added the provision 
that "if the University should refuse 
to establish the advance course of 
study as above provided. ..the princi- 
pal and income shall be given to Har 
vard Uni\ersity.'" 

Today, Henry Isaiah Dorr is 
remembered as little more than a 

name, the donor ot an endowed chair 
in anesthesia at Harvard and of a 
research laboratory at Temple that 
has long since disappeared, along 
with the building in which it was 
housed. Yet Dorr was a great deal 
more than a name: he was a prophet 
who combined natural compassion 
and Yankee shrewdness with a rever- 
ence for science and a vision of the 
academic practice of anesthesia that 
was years ahead of his time. Today, he 
would take great pleasure to find 
that, in his own words, his "glorious 
deeds" have indeed been "transmitted 
to posterity" in the Anaesthesia 
Research Laboratory at Massachu- 
setts General Hospital. ■ 

John P. Bunker '45 is emeritus professor of 
anesthesia at the Stanford University School of 
Medicine and visiting professor at the Univer- 
sity College London Medical School. 

MEN OF EMINENCE: Three physicians 
have held the title of Henry Isaiah Dorr 
Professor of Research and Teaching in 
Anaesthesia and Anaesthetics: Henry K. 
Beecher (top), Richard J. Kitz (center), 
and Edward Lowenstein (bottom), the 
current holder. 



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